Design for Dignity: A New Mammogram Experience

DESIGN FOR

DIGNITYA New Mammogram Experience

Mara Finley

DESIGN FOR DIGNITYA New Mammogram Experience

Mara Finley




To my professor and head cheerleader, Shirl Buss, for her generosity, encouragement, and support. I couldn’t have done it without you!

To my Mámala, Candace Falk, for inspiring me to turn her otherwise harrowing experience with breast cancer into a design opportunity for progress and change.

To Michael Lopez, for graphic design assistance, fashion advice, unpaid therapy, and calming influence.

To Rick Merino, for love, patience, support, and comic relief.

© 2012 by Mara Finley. Department of Design and Industry, San Francisco State University.

I certify that I have read Design for Dignity by Mara Finley, and in my opinion this work meets the criteria for approving a thesis in partial fulfillment of the requirements of the requirements for the degree: Master of Arts in Design and Industry at San Francisco State University.

Pino TroguAssistant Professor of Design and Industry

Shirl BussLecturer of Design and Industry

Ricardo GomesProfessor of Design and Industry

Breast cancer is the most common cancer for women in the United States, and the second most frequent cause of cancer mortality (after lung cancer). One in eight women are diagnosed with breast cancer within their lifetime. The most common form of noninvasive breast cancer is Ductal Carcinoma In Situ (DCIS). If caught early, women with DCIS have a very high survival rate—100% of women survive within five years of diagnosis, and only 2% of women die within ten years of diagnosis. There are 2.5 million breast cancer survivors in the US. Although statistics show that breast cancer is highly treatable, the disease still kills 200,000 American women each year.

Mammography, a low dose X-ray of the breast, detects microcalcifications indicative of cancerous cells. Although other imaging technologies exist—ultrasound, MRI, PET, etc.—the mammogram is the most widely used screening tool today. The mammogram is a relatively reliable and cost effective screening method, but the exam itself is uncomfortable and unpleasant at best. Thirty-six percent of women over forty have either never had a mammogram, or have not had a mammogram in the last two years. If applied thoughtfully and with care, design thinking can transform the mammogram into a more pleasant, if not wholly pleasurable experience. A more comfortable, less intimidating mammogram experience would encourage more women to get screened. Viewed in this light, a redesign of the mammogram experience goes beyond the cosmetic, and into the realm of life and death. Women who receive regular mammograms are 30% less likely to die from breast cancer (Finkel, 2005).

I certify that the abstract is a correct representation of the content of this thesis.

Ricardo GomesChair, Thesis Committee

May 4, 2012

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IntroductionProblem statement Significance of the problemInspirationSub-problemsResearch methodology

EnvironmentHistory of the healthcare environmentWhy redesign the mammogram environment? Existing theories and trends in healthcare designCase studies/Site visitsBeyond the mammogram environmentBeyond the healthcare environmentDesign response

Imaging technologyHistory of mammogram imaging technologyWhy redesign mammogram imaging technology? Case studyBeyond mammogram technologyBeyond healthcare technologyDesign response

OutreachHistory of breast cancer outreachWhy redesign breast cancer outreach?Case studiesEditorial opinion and social critiqueBeyond breast cancer outreachDesign response

CONTENTS

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107

AccessibilityHistory of access to mammography Why redesign access to mammography?Case studyBeyond access to mammographyDesign response

GarmentHistory of the hospital gownWhy redesign the hospital gown?Case studiesBeyond healthcare attireDesign response Materials research PrototypingBrandingUser testing and feedback

Conclusion

References

12 Design for Dignity: A New Mammogram Experience

12

INTRODUCTION

13


It’s a call to other designers...to improve mammography for all women,

present and future. Early detection through mammography

saves lives, but beyond mammography, we should work to eradicate the

disease altogether.The ultimate improvement to the

mammogram experience would, of course, be its obsolescence.

Introduction 15

Breast cancer is the most common cancer for women in the United States, and the second most fre-quent cause of cancer mortality (after lung cancer). One in eight women are diagnosed with breast cancer within their lifetime. The most common form of noninvasive breast cancer is Ductal Carci-noma In Situ (DCIS). If caught early, women with DCIS have a very high survival rate—100% of women survive within five years of diagnosis, and only 2% of women die within ten years of diagno-sis. There are 2.5 million breast cancer survivors in the US. Although statistics show that breast cancer is highly treatable, the disease still kills 200,000 American women each year.

Mammography, a low dose X-ray of the breast, detects microcalcifications indicative of cancerous cells. Although other imaging technologies exist—ultrasound, MRI, PET, etc.—the mammogram is the most widely used screening tool today. The mammogram is a relatively reliable and cost effective screening method, but the exam itself is uncomfortable and unpleasant at best. Thirty-six percent of women over 40 have either never had a mammogram, or have not had a mammogram in the last two years (Finkel, 2005). If applied thoughtfully and with care, design thinking can transform the mammo-gram into a more pleasant, if not wholly pleasurable experience. A more comfortable, less intimidating mammogram experience would encourage more women to get screened. In an article for the Canadian Medical Association Journal (CMAJ), N. Porter-Steele responds to Dr. Heather Bryant’s article, “How should we interpret noncompliance with screening mammography?”(Bryant, 1996) with candor rarely found in a medical journal:

How about the possibility that noncompliance results from deliberate consideration of the trade-offs, particularly for women like me whose breasts are often intensely painful? I have had mammography many times in my life, and the mammograms have usually revealed lumps, many of which have been removed and all of which have been benign. I am at a low risk of breast cancer in terms of heredity, diet and various other factors. On nearly every oc-casion when my breasts were squeezed into the machine’s large clamps, it hurt like hell. When my husband asked what the pain was like and I tried to find an analogy, I could find nothing closer than the feeling that the whole breast is like a boil. Therefore, when I am told to have a mammogram, I usually wait a few years (Porter-Steele, 1996).

Viewed in this light, a redesign of the mammogram experience goes beyond the cosmetic, and into the realm of life and death. Women who receive regular mammograms are 30% less likely to die from breast cancer (Finkel, 2005).

Although mammography is widely accepted as an effective breast cancer-screening tool, physician and patient groups are in constant debate regarding the recommended age to begin screenings and the frequency of subsequent screenings. In 2009, the US government released a new set of federal guide-lines for mammography, which increased the recommended age for first screenings from 40 to 50, and the frequency of screenings from annual to biennial. The 2009 federal guidelines were challenged by, among others, the American College of Obstetricians and Gynecologists and the American Cancer Society (ACS), both of whom continue to recommend that women begin annual screenings at 40 (Ko-lata, 2009).


In 2011, The University of California, San Francisco (UCSF), published a study in the Annals of In-ternal Medicine that supports the 2009 federal guidelines. The UCSF study is based on 170,000 wom-en who began screening between the ages of 40 and 59. In the study, UCSF states that more than half of women screened annually will receive at least one false positive result within ten years of their first mammogram. False positives not only cause fear and anxiety, but also lead to unnecessary expense and exposure to additional diagnostic radiation. In some cases, false positives can even lead to unnecessary biopsies, which cause pain, scarring, and can make future mammograms more difficult to read (Allday, 2011).

Although the UCSF study seems to solidify the 2009 federal guidelines, the mammography debate continues. The ACS, for example, still recommends that women begin screening at 40. The ACS sites a 2010 study published in the journal Cancer, that looked at the effectiveness of screening mammogra-phy for women in their forties. The study, conducted by researchers at the Umeå University in Sweden, found that “the death rate from breast cancer was 29% lower in the women who got mammograms compared to those who didn’t” (Berger, 2010). Many physicians now recommend a more personal course of action, and suggest that patients and physicians decide on an individual basis when and how often to screen (based on family history, etc.). Whether women are screened annually or biennially, be-ginning at 40 or 50, regular mammograms are still considered crucial in the prevention of breast can-cer mortality. The federal guidelines and the UCSF study may prevent women from future false posi-tives, but they may also discourage women from beginning and maintaining regular screening. Now more than ever, it’s important to improve the mammogram experience, and in doing so, encourage women to begin and continue regular screenings.

PROBLEM STATEMENT

The initial message of the breast cancer outreach movement—get a mammogram, save your life—does not reflect the current complexity surrounding the mammography debate. Mammography may not have lived up to its promise, but, whether we like it or not, it’s still the predominant gateway to breast health. If we’re stuck, for the time being, with an imperfect screening tool, why not work to im-prove the overall experience that surrounds it?

Mammogram environments, often drab and uninviting, are a good place to start. Although some mammography environments now incorporate natural light, warm colors, views to nature, etc., good design in the healthcare environment is too often thought of as a luxury. As design critic Allison Ar-ieff notes, Kaiser Permanente’s (KP) “Total Health Environment” program, which “applies design thinking to every aspect of [its] operations,” improves not only the patient experience, but also the health provider’s bottom line:

Though hospitals will end up looking better, these efforts aren’t about decorating, they’re about outcomes. Numerous studies point to the benefits of the design strategies and environ-mental interventions KP has proposed and implemented. Factors like the quality and intensity

17Introduction

of light, access to natural light, the noise level in a room, the privacy afforded by single-patient rooms — all of these affect patient health, satisfaction, soundness of sleep and speed of heal-ing. Views of nature have been shown to decrease depression, pain, stress and even length of hospital stays. Floor plans that are designed to help health care workers do their work more effectively (as well as increase privacy and comfort of patients) can reduce falls, improve pa-tient communication and lessen stress for all (Arieff, 2009).

Imaging technology, like the environment that surrounds it, could also benefit from design thinking. In addition to physical redesigns, changes to the technology’s user interface could improve the patient experience. If, for example, technologists shared visual information with their patients throughout the exam, women would experience a greater sense of inclusion, control, and subsequent calm. No matter how much imaging technology improves, however, the technologist, not the technology, sets the tone of the mammogram experience. Technological innovation, therefore, should seek not only to improve the patient experience, but also to improve working conditions for technologists. If the physical exam is easier to perform, technologists will have more time and energy to care for their patients’ emotional wellbeing.

Well-designed mammogram environments and imaging technology, however, lose their meaning if women don’t take advantage of them, or are unaware of their existence. Outreach campaigns are key to getting women in the door. The message of mainstream outreach campaigns, however, is often compromised by corporate sponsorship. The beauty industry, in particular, profits from the sale of pink ribbon products, many of which contain known carcinogens. Other forms of “pinkwashing” in-clude promoting breast cancer awareness as an end in itself, rather than a first step toward prevention and treatment of the disease. As social critic Barbara Ehrenreich attests, pink products also infantilize women and reinforce stereotypical notions of femininity (Ehrenreich, 2001).

Although outreach campaigns have effectively promoted breast cancer awareness, mammography re-mains inaccessible to much of the population. Black women, in particular, are under served when it comes to breast health (NewsRX, 2012). Disabled women also face mammogram imaging technology that only accounts for ‘normal’ bodies. The Americans with Disabilities Act (ADA), passed in 1990, has increased accessibility to the built environment. But ADA requirements require the bare minimum from designers, and are often addressed only as an afterthought. As Graham Pullin states in Design for Disability, designing for the constraints of disability should be approached as a healthy challenge, ca-pable of “catalyze[ing] new design thinking.” Pullin’s approach is playful rather than clinical—like Ai-mee Mullins, the model, athlete, disability rights spokeswoman, and wearer of designer leg prostheses, Pullin envisions design for disability as an opportunity for the wearer to surpass, not just keep up with “normal” ability. Pullin takes accessibility beyond the notion of universal design, and into the realm of inclusive design—all people, regardless of ability, should have access to variety and choice. In design for disability, as in mainstream design, one size does not fit all (Pullin, 2009).


Inspired by Mullins and Pullin, I’ve taken an optimistic, playful approach to redesigning the mam-mogram experience. Although scientific research takes precedence over fashion, I chose to focus my redesign on the hospital gown. Scientists are already working hard to find the cause of and cure for breast cancer, and engineers create better and better imaging technology each year. What, then, can a designer do to im-prove the mammogram experience? Could something as simple as a cozy, good-looking hospital gown encour-age more women to get regular mammograms? If nothing else, it’s an important gesture—one that shows re-spect for women’s bodies, as well as their sense of dignity and modesty. In redesigning the hospital gown, I hope to “exceed all patient expectations,” and, as British designer Christopher Kane says, “to replenish everything and make it bright and lovely” (Scotsman, 2009).

Like General Electric's (GE) Healthymagination program, I hope that the gown will “reframe the experience and empower women” (Jackson, 2011). The gown is not only a garment, but also a message—it’s green rather than pink, to represent the environmental causes of breast cancer, and to steer clear of what Ehrenreich calls the “cult of pink kitsch.” The gown is an idea, not an end in itself—a prototype rather than a final design. In future iterations, I’d use all eco-friendly materials, and offer multiple gowns in a variety of colors. The gown is also a conversation starter—when I took my prototypes on site visits, the visceral, enthusiastic response I got was truly inspiring. What if, one response suggested, the gown had applications outside of the mammogram environment, and could act “as a reminder and a tool to facilitate at home checks” (IDEO, 2012). Design breeds design—more than anything, the gown is a call to other designers to join the project, and to work not only toward a better mammogram experience, but also toward a day when breast cancer no longer exists, and the need for mammog-raphy is just a distant memory.

SIGNIFICANCE OF THE PROBLEM

As stated above, women who receive regular mammograms are 30% less likely to die from breast cancer. Mammography is an effective screening tool, and breast cancer, if detected early, is a highly treatable disease. Why, then, do 36% of women over 40 risk their lives by not receiving regular mam-mograms? Mammography as we know it is uncomfortable, unpleasant, and even painful. In 2009, re-searchers at the annual meeting of the American Society of Clinical Oncology (ASCO) presented a paper titled “Risk of noncompliance due to patient discomfort during screening mammography.” In the paper, researchers note that:

Ninety patients (58%) reported their mammogram experience was unpleasant, caus-ing pain and bruising. In spite of the discomforts reported, 132 (82.5%) patients said they would continue the screening as recommended. However, 28 patients (17.5%) indicated their intention not to get further mammograms based on their painful ex-perience, unless the screening technology was improved (Mullai, N. & Murugesan, N., et. al., 2009).

19Introduction

The mammogram experience is in dire need of a redesign. Technological innovation is the most obvious solu-tion, and many scientists and medical engineers are hard at work developing an accurate, painless breast-screen-ing tool of the future. In fact, many of these technologies already exist—MRIs and ultrasounds are already widely used for diagnostic breast examinations. But, for better or worse, mammography is the most effective, inexpensive screening method in use today.

Technology aside, the mammogram experience needs to be re-examined holistically. What do women experience, from the time they decide to (or decide not to) get a mammogram to the moment they leave the exam, and be-yond? How can information on breast health be redesigned to reach more women effectively? How can the pro-cedural aspects of mammography be redesigned to streamline the experience? How can the environment, from waiting rooms to clinical rooms, be redesigned to make women feel less anxious throughout the exam?

A great deal of scholarly research addresses mammography from a scientific and/or psychological perspective. Healthcare design in general has also been widely researched. But little work has been done at the intersection of mammography and design. Design methodology, if effectively applied to the mammogram experience, has the power to change behavior, and, in doing so, save lives.

INSPIRATION

I was inspired to pursue a mammography redesign project by my mother, Candace Falk, who was diagnosed with breast cancer at age 48. At the time of her diagnosis, I was 16 years old, and my younger brother, Jesse, was just nine. Luckily, her cancer was caught early on— the diagnosis was DCIS with micro-metastesis. With her doctors, my mother chose to have a mastectomy, followed by six months of chemotherapy. She was told that a mastectomy would bring the chance of recurrence down to 25%. Radiation and chemotherapy would bring that percentage down only slightly. My mother declined radiation, since it can only be done once, and she wanted to keep it as a backup course of treatment in case of recurrence. She opted to have chemotherapy, even though its effect was known to be minimal at best. Statistics aside, she said, she had two young children, and wanted to do as much as she could to see us grow up. During chemotherapy, she was given two infusions and fourteen pills per month. Chemo left her nauseous and exhausted. My mother, notoriously warm, outgoing and lively, was barely recognizable to my brother and I when she returned home from treatment, trudging up the stairs to bed without so much as a hello.

Despite the horror of surgery and the misery of chemo, my mother quickly returned to good health. She had reconstructive surgery as well, so, besides her naturally curly hair going temporarily straight, it looked, on the out-side, like everything was just fine. My family took a trip to Tuscany, I went off to college—life continued on. Still, the threat of recurrence loomed. Fifteen years later, a mammogram revealed a lump in my mother’s other breast. The mammogram was followed by an ultrasound and a biopsy, which led to a diagnosis of lobular carcinoma in situ (LCIS). The cancer, deemed invasive, had spread to her lymph nodes. Although a lumpectomy preserved much of her breast, she had to have the affected lymph nodes removed. Lymph node removal led to limitations in her range of motion— despite months of physical therapy, she still can’t reach her arm all the way over her


head. Due to the invasive nature of the recurrence, my mother also underwent a course of radiation. Although the side effects of radiation were somewhat less extreme than chemo, they still included hair loss, a burning sen-sation in her chest, and exhaustion.

As of today, my mother is cancer free, but of course she lives with a constant fear of recurrence. Because of in-creased risk, she is screened more often than women with no history of breast cancer. Although not a carrier of the BRACA gene, a genetic mutation that would significantly increase my risk of getting the disease, my mother and I have obvious reason to worry about each other’s health. When I first started design school, everyone in my family had a “brilliant” design idea to pitch to me—dog toilets, etc. I ignored these, as well as a slew of “what if I had thought of that” regrets on their part—my mother claims that it was her idea to put cup holders on stroll-ers, my boyfriend uses his lacrosse stick to throw balls to our dog, a personal innovation which he feels he should have commercialized as the now ubiquitous “Chuck It,” etc. So when my mother told me she had another great project idea for me, I was skeptical. Her idea, however, to redesign the mammogram experience into a more comfortable, less humiliating ordeal, was indeed brilliant. My notorious phobia with hospitals—just the smell makes me queasy, and I faint easily—makes this topic an unlikely choice. But why not build upon my own fear and dread of the hospital environment, and use it as a source of inspiration for potential redesigns?

With this project, I hope to bring my mother’s inspiration to life, and, by doing so, turn our family’s otherwise harrowing experience with breast cancer into a design opportunity for innovation and change. This project, how-ever, is just a beginning. More than anything, it’s a call to other designers, architects, engineers, healthcare provid-ers, etc., to improve mammography for all women, present and future. Early detection through mammography saves lives, but beyond mammography, we should work to eradicate the disease altogether. The ultimate improve-ment to the mammogram experience would, of course, be its obsolescence.

SUB-PROBLEMS

• Environment• Imaging Technology• Outreach• Accessibility• Garment

RESEARCH METHODOLOGY

‘Unfocus group’ (Kelley & Littman, 2005)• eight women, my mother and friends,age 40-65

Design Salon• organized by my professor, Shirl Buss, with six of her female friends

and colleagues, all designers and architects

21Introduction

Individual interviews • my mother, Candace Falk• my friend, Bithia Rosales

Expert interviews• Dr. Bonnie Joe and technologist Carol Sperber, UCSF• Linda Mahle,Terrie Kurrasch, and Ann West, Ratcliff Architecture• Jacqueline Frost, California Pacific Medical Center (CPMC)• Melody Chan Doss, Britex Fabric • Judi Rogers, Through the Looking Glass (TLG)

Site Visits• UCSF• CPMC • Alta Bates

Codesign• Jenna Phillips and Meredith MacLeod (sewing)• Angela DeCenzo (photography)

Feedback• Prof. Connie Ulasewicz, Apparel Arts Department, SFSU• HCD Connect, IDEO.org.


23

ENVIRONMENT


Until all breast health environments encourage women not only to get screened for the

first time, but also to return for regular screenings,

we as designers need tobegin with the basics.

25Environment

DEFINITION

Hospital “An institution that provides medical, surgical, or psychiatric care and treatment for the sick or in-jured” (American Heritage Dictionary, 2003).

HISTORY OF THE HEALTHCARE ENVIRONMENT

Western medicine has its roots in ancient Greece, where the physician Hippocrates and his disciples established medicine as a distinct discipline and profession. During the Hippocratic movement, itiner-ant doctors worked independently, making house calls to sick patients. Although not a hospital, per se, the terminally ill were sent to the Temple of Asclepius, Greek God of healing. The temple was built far from town, near a fresh water source, with views of the sea. At the temple, patients were fed a healthy diet, drank pure water, and encouraged to play music, interact socially, sleep, and pray. In an-cient Rome, no such luxuries existed—sick or injured soldiers were treated on the battlefield, and lep-ers were segregated into colonies. The first hospitals were built in the Middle Ages, by the Knights of Templar. These early hospitals were meant to aid Christians pilgrims along trails to holy sites.

Early hospitals quickly developed a reputation for spreading disease, such as puerperal fever during child-birth. Doctors often went straight from an autopsy to the delivery room without washing their hands or changing their clothes, and, for obvious reasons, most women chose to give birth at home. It wasn’t until the mid to late 1880s that germ theory took hold—doctors began washing their hands and using antiseptics to sterilize their instruments. To further minimize the risk of infections, hospital environments were built with sturdy, easily cleanable materials—metal, stone, tile, etc. The new, sterile hospital environments became just that—safer, but also colder, noisier, and less comfortable. In their quest for sterility, hospitals also began to isolate patients into single rooms, with limited visiting hours. As medical technology advanced, greater em-phasis was placed on diagnosis and diagnostic equipment. Hospitals grew to accommodate new technology, and began to feel more like spaces to house machines than people (Sternberg, E.M., 2009).

WHY REDESIGN THE HEALTHCARE ENVIRONMENT?

Mention the word hospital and most people cringe in fear:

Hospitals are simply uncomfortable places to be in or even visit. While no one hopes to suffer an illness or injury, most people…would prefer to heal at home if it were possible rather than spend any amount of time in a patient room…However, the tide is turning in healthcare de-sign, and hospitals are now, more than ever, taking cues from hospitality and residential design (Nieminen, 2007).

In their desire to remain competitive, hospitals are beginning to focus not only on cutting-edge medi-cal technology, but also on patient-centered care.


In a survey of 40 of the top healthcare design firms, Interior Design magazine found that 97% agreed that healthcare clients are investing more in design than ever before (Light, 2007). Recent trends in healthcare reflect the rising interest in design as a key element of patient-centered care: “Further evi-dence that it’s all about the patient—and their families and the healthcare staff—can be found [in] de-sign trends such as the separation of public and private spaces; the inclusion of healing gardens; color palettes that take their cues from nature…[and] family zones with play areas…” (Mosher, 2004).

Although hospitals have begun to invest more in environmental design, many mammography environ-ments remain uninviting and drab. A well designed, unintimidating mammography environment would encourage more women to get screened, and would make return screenings far less daunting.

EXISTING THEORIES AND TRENDS IN HEALTHCARE DESIGN

Patient centered care“Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting.” Core concepts include dignity and respect, information sharing, participa-tion, and collaboration (PBS, n.d.).

Evidence based design (EBD)

EBD refers to a process for creating healthcare buildings, informed by the best available evi-dence, with the goal of improving outcomes and continuing to monitor the success of de-signs for subsequent decision-making…EBD is not about hospitals that are simply nicer or fancier than traditional hospitals. Rather, the focus of evidence based design is to create hos-pitals that actually help patients recover and be safer, and help staff do their jobs better.

For example, Research teams from Texas A&M University and Georgia Tech found that positive changes in healthcare design can help “reduce errors, reduce stress, improve sleep, [and] reduce pain and drugs” (Ulrich, 2005).

Performance based designBecause hospitals have more regulations than other buildings, designers often sacrifice creativity for code-compliance. Performance based design allows for greater flexibility by defining “the objectives for achieving the intended levels of occupant safety, property protection, and community welfare…[Performance based design] often more realistically represents the special circumstances that exist in a hospital environment” (Hoffschneider, 2006).

27Environment

Translational architectureTranslational architecture brings research to the forefront with “a new breed of buildings to promote a form of hyper-interactivity between clinicians and researchers…When patients have views to the re-search laboratories, it conveys a sense of confidence in the institution” (Shin, 2007).

Sustainability“Sustainability increasingly is seen as a logical extension of a hospital’s mission to care for people and consistent with the philosophy ‘first do no harm’. At the most local level—that of patients, family members, and staff—sustainability is about indoor environmental quality, stress reduction, safety, and increased performance in both healing and care giving” (Guenther, 2006).

Patient as consumer/ Aging of the baby boom generationLike all product and service providers, hospitals recognize that baby boomers demand quality. Al-though the influence of hospitality and residential design have helped hospitals meet these demands, “the ultimate goal of care giving is to get the patient well and back to his [or her] normal life in the shortest period of time” (Burnett, 2005).

Integration of Eastern medicine

36 percent of adults in the U.S. are using some form of complementary and alternative medi-cine…with many large insurance companies now accepting claims for treatments like acu-puncture, it seems even Middle America has accepted that Western medicine can be enhanced with additional mind-body healing. However, while spas across the country have been luring practitioners for years, traditional hospitals have typically avoided investing in these types of facilities (Raimondi, 2004).

Healing Gardens“In past centuries, green nature, sunlight and fresh air were seen as essential components of healing, [but] from 1950 to 1990, the therapeutic value of access to nature all but disappeared from hospitals in most western countries” (Marcus, 2007).

CASE STUDIES/ SITE VISITS

Healthcare environments specific to mammography

• Carol Franc Buck Breast Care Center, UCSF, Mt. Zion Campus, San Francisco, CA

• Breast Health Center, CPMC, San Francisco, CA• Carol Ann Read Breast Health Center, Alta Bates Summit Medical

Center, Berkeley, CA


I conducted site visits at UCSF and CPMC, and found both centers to be adequately designed at best. At UCSF, mediocre quilted art adorns the waiting room, and a few flower stencils have been painted onto examination room walls. Perhaps because of their imminent move to the Mission Bay campus across town, UCSF’s mammography center hasn’t put much effort into redesigning their current space.

CPMC was equally disappointing. I toured the facilities with the center’s interim manager, Jackie Frost. Ms. Frost was enthusiastic about my project, and showed me around the center with pride. Although, as she said, CPMC is committed to creating a more spa like environment for their patients, the center still feels like a hospital with a few pretty pictures thrown in for good measure. Ms. Frost pointed out colorful nature photos, wicker hampers for used gowns, and newly installed wood flooring (J. Frost, personal communication, January 17, 2012). All of these elements helped to warm up the space a bit, but left much to be desired.

Across the bay at Alta Bates, however, the Carol Ann Read breast health center is a model of clever architectural planning and heartfelt attention to interior design details. The Carol Ann Read center in-corporates many of the aforementioned trends in healthcare, and, in doing so, brings their theoretical framework to life. In connection with the project, I had the great pleasure of interviewing three wom-en associated with Ratcliff Architecture, the firm responsible for redesigning the breast health center. The following is an article I wrote for the 2011 edition of Acumen: Insight into the Design Process, “a student publication created by the Department of Design and Industry at San Francisco State Univer-sity” (Acumen, 2011).

The Architecture of Healing An interview with Linda Mahle, AIA, and Terrie Kurrasch, FACHERatcliff Architecture, Emeryville, CA

Ratcliff Architecture’s offices are housed in a former warehouse on a leafy block in Emeryville, CA. Established in 1906, Ratcliff is one of the oldest firms in the Bay Area. Still a family firm, Ratcliff specializes in healthcare, civic, and educational design. On a cool, sunny morning, I drive across the Bay Bridge from San Francisco to interview two women of Ratcliff: Linda Mahle, Associate Principal, and Terrie Kurrasch, Senior Strategist and Planner. An unas-suming front door opens onto a bright, airy reception area. The receptionist greets me warmly, and offers me coffee while I wait.

I thumb through architecture magazines, and fantasize about working in such a well-designed, modern office. Linda and Terrie walk down a few wide, carpeted stairs to meet me. After quick handshakes and pleasantries, they lead me back through a gently sloping walkway and into a glass-walled conference room.

At the conference table, I take out a notebook full of questions. I’ve come to ask them about their work on the Carol Ann Read Breast Health Center at Alta Bates Hospital in Berkeley, CA. My graduate thesis focuses on improving the mammogram experience through design, and, according to many of the women I’ve interviewed for the project, the Breast Health Center at Alta Bates has successfully done just that.

29Environment

Linda and Terrie begin by introducing themselves and their work. Linda, an architect by training, has specialized in healthcare design for the last 15 years. Terrie, on the other hand, has no formal training in architecture or design. With a background in public health and healthcare administration, Terrie’s career took a circuitous route to Ratcliff. While working as Director of Mergers and Implementation at Alta Bates Summit Medical Center, Terrie selected Ratcliff to work with her on a hospital redesign project. After several subsequent collaborations, Terrie developed close working rela-tionships with many of the architects at the firm. When budget cuts forced Summit Health to eliminate Terrie’s position, one of her friends at Ratcliff asked her to join their team as a strategist and planner.

Although the job offer came as a welcome, if unexpected surprise to Terrie, it made perfect sense to Ratcliff. Terrie’s expertise in hospital planning would prove invaluable to the architects in their mission “to provide sensitive healing envi-ronments that are attentive to patient comfort and well being.” As a 30 something graduate student in Industrial Design with a BA in English and more than ten years in the restaurant industry, Terrie’s story is particularly inspiring to me. As we shift careers more often and later in life, it’s reassuring to meet someone who’s found a niche that so seemlessly in-corporates one career into another.

After their introductions, I ask Linda and Terrie whether they believe in the notion of healing environments. “Do you have all day to talk?” says Terrie, and they both look at each other and laugh. Clearly this is a topic that merits more than an hour-long conversation, so we decide to use the Breast Health Center, which opened in 2008, as a jumping off point to discuss healthcare design theories and their practical applications.

The Breast Health Center began as the brainchild of two visionary physicians at Alta Bates, surgical oncologist Lisa Bailey, MD, and radiologist Ira “Buzz” Kanter, MD. Funding for the project was provided by the family of Carol Ann Read, a Bay Area wife and mother who lost her battle with breast cancer in 1998. Bailey and Cantor first commissioned Jain Malkin, Inc., a San Diego based interior architecture firm specializing in healthcare design, to work on the project. Malkin was asked to transform an outpatient gastrointestinal unit into a welcoming breast center for women. In an effort to keep costs at a minimum, the architects hired to work with Malkin drew up plans that called for as little demolition to the existing space as possible. For reasons Linda and Terrie were either unaware of or wished not to discuss, Alta Bates parted ways with the initial architects before construction began. Malkin, who had collaborated with Ratcliff in the past, brought the firm on to pick up the project where the previous firm had left off.


Creating a welcoming environment within an existing, finite hospital space is an inherently challenging proposition. Lin-da and Terrie had to contend not only with building codes, but also with an exhaustive laundry list of hospital rules and regulations. In lieu of these challenges, they convinced Summit to break the space down to its bare walls and start construc-tion with a clean slate. With the demolition battle won, Linda and Terrie still faced a series of design dilemmas—how to accommodate machinery without making the space feel mechanical? How to maintain a safe, sterile environment without the feeling of sterility? In my own work with mammography, I’ve confronted similar obstacles—how can the mammogram experience be redesigned for comfort without interfering with the clinical necessities of a hospital environment?

Although hospital administrations are often hesitant to involve their staff in the design process, Summit encouraged staff participation throughout the project. A happier, more relaxed staff, they assumed, would naturally provide better patient care. With input from the mammography staff, Linda, Terrie, and Jain were able to tailor the space to the specific needs of Summit’s caregivers and patients. As a predominantly female design team, Ratcliff and Malkin worked with their own, often unpleasant mammogram experiences in mind. Jain defined the space as a series of ‘dramatic events’: waiting, dressing, clinical, etc. As the patient transitions from one ‘dramatic event’ to another, the space becomes more and more intimate. Jain sought to create a sense of calm throughout the otherwise harrowing experience of getting a mammogram. A series of chapel-like rotundas are meant to provide moments of respite and quiet contemplation. Jain’s initial concept included running water in one of the rotundas, but the hospital was wary of contamination and slippery floors. Instead of abandoning her vision, Jain created the illusion of running water with sound, color, and light—panels of blue tile are illuminated from above, and soothing water sounds play continuously in the background.

Linda, Terrie, and Jain made a conscious decision to design two separate waiting areas—one for women receiving routine, diagnostic mammograms, and the other for women who’d been called back for further testing. The designers chose to divide the waiting area with the cohort concept in mind—women coming in for routine screenings could talk to each other, or not, in a large, casual setting, while women returning for possible complications could talk to each other in a smaller, more private space. The designers also included a play area for children accompanying their mothers to appointments. The play area’s glass walls create a feeling of openness, while also allowing children to play amongst themselves while their mothers look on from the waiting area. Terrie had children’s handprints sandblasted into the glass wall, so that actual handprints wouldn’t create a constant cleaning headache for the staff.

The dressing area calls to mind a boutique or spa rather than a locker room. Women change in private booths (with doors rather than curtains), then lounge in their robes on comfortable chairs while waiting to be called in for their mammograms. Clinical rooms are dimly lit, with warm toned walls. After the exam, the designers made sure to provide vanities and mir-rors so that women can, as Terrie says, “feel put back together again” before leaving.

Although the Breast Health Center has received awards and accolades from both the healthcare and design communi-ties, Linda and Terrie hear more about the things that don’t work than those that do—the staff is unhappy with hand washing sinks, etc. Although they do a post-occupancy evaluation with each project, patient satisfaction is difficult to gauge. The designers don’t often talk directly to patients, and patient surveys are problematic at best. Linda and Terrie wish that patients could fill out surveys anonymously—with names required, patients are more likely to sugar coat their responses. After all, who wants to upset their doctor? I came to talk to Linda and Terrie because of overwhelmingly posi-

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tive feedback I’d gotten from Bay Area women about the Carol Ann Read Breast Health Center. “That’s good to hear,” they say. After such thoughtful work, it’s a shame that they don’t hear more often from the people who’ve benefited from it. Linda even says that, because of insurance constraints, she goes to another, drabber facility for her own mammograms. Clearly these women are driven more by the desire to create healing spaces than by notoriety or self-interest.

I could ask them questions all afternoon. We touch on evidence based design theory, or EBD, which the Center for Health Design defines as “the process of basing decisions about the built environment on credible research to achieve the best possible outcomes.” Linda and Terrie use evidence based design to convince reluctant clients that well designed health-care environments, although costly, save money in the long run by reducing the spread of infection and the time it takes for patients to heal. Evidence based arguments help designers translate design speak into more business friendly language—hospital administrators, however much they appreciate good design, are ultimately concerned with the bottom line. EBD is also useful when talking to healthcare providers about the importance of design—with their scientific backgrounds, doctors and nurses often relate more to quantifiable information than they do to aesthetics or formalism. Linda and Terrie also cites Fable Hospital as a successful, if conceptual, evidence based design project. Fable Hospital, created by the Cen-ter for Health Design in 2004, imagines an ideal hospital of the future based on an amalgamation of emerging health-care design ideas. Now in its second incarnation, Fable 2.0, the project promises not only an idyllic patient experience, but also a significant return on investment for hospitals.

When I ask Linda and Terrie about other healthcare designs they’ve worked on, Linda brings up John Muir Medical Center in Walnut Creek, a project she is particularly proud of. The addition Ratcliff designed for John Muir accepts its first patients this week, after nearly ten years of planning, design, and construction. A decade long project seems daunting to me, but with so many factors involved, health care facilities aren’t built overnight. Linda is pleased with John Muir’s willingness to embrace emerging trends in health care design—single patient rooms, decentralized nursing stations, electronic record keeping, etc. Although some nurses complain about the lack of designated space for patient charts—the architects based their decisions on the assumption that all charts will soon be digital—most of the staff is enthusiastic about the building’s forward thinking design.The healthcare community is known for clinging to its well-worn ways, but with projects taking as long as they do, design-ers must convince their clients to think toward the future. I start to ask about healing gardens, but we’ve been talking for over an hour, and Linda and Terrie have to get back to work. “In Sweden,” says Linda, “the building codes demand that each patient has a view to nature.” We may not be in Sweden yet, but with women like Linda and Terrie on our side, the future of American healthcare design looks bright.

Caring for Patients in a Different Way: From Nursing to ArchitectureAn Interview with Ann West, RN, AIASan Francisco, CA

A week or so later, I meet Ann West, RN, AIA, at the Beach Hut Café in San Francisco’s Presidio. A design tri-umph in itself, the Presidio has been transformed from private, military land into a bustling public park. The café, with views of the ocean and the Golden Gate Bridge, is a fine location for an architectural interview. Ann also worked for


Ratcliff architecture—how she got there is a story in itself. After attending Skidmore College, an all girls liberal arts school in upstate New York, Ann worked as a nurse in Manhattan. She then moved to San Francisco, where she worked at San Francisco General Hospital. Ann then returned to school at UCSF for a masters in child mental health nursing. When she graduated, there weren’t many jobs in her field, so she worked for awhile in administration. Ann then worked as head of pediatric nursing at St. Luke’s Hospital, as well as in the pediatric units at UCSF.

With so much experience, both practical and academic, Ann turned her attention to teaching. As a teacher, Ann found herself teaching young nurses ideal practices, and then sending them into a working reality where ideals flew right out the window. She knew she was setting her students up for disappointment and frustration, but couldn’t bring herself to compromise her vision of what the profession could and should be. So, after ten years in the field—as a floor nurse, an administrator, and an educator—Ann took a year off, and a leap of faith, to search for a new career.

It all began with a night class at UC Berkeley Extension, Intro to Architecture for Non-Architects. Ann had always been fascinated by architecture, but had never had the opportunity to study it—Skidmore didn’t even have an architecture department. Once enrolled in the extension class, Ann was hooked. She spent the next five years studying architecture at Cogswell College in San Francisco. Cogswell only had two departments, architecture and engineering, and employed only professors who also practiced in the field. Surrounded by like-minded students and professors, Ann enjoyed a hands-on immersion into a new, architectural world.

During her fourth and fifth years at school, Ann worked for SMP, a firm specializing in the design of healthcare facili-ties. Although she enjoyed the job, her work there entailed more research than hands on design. Once out of school, Ann took a job consulting for her former workplace, San Francisco General Hospital. Although she brought a great deal of expertise to the job—she could see the buildings not only as an architect, but also as a nurse—the work was overwhelm-ing. She needed to work with other people— people who knew what they were doing.

On her first day at Ratcliff Architecture, Ann felt out of her league. She locked herself in the bathroom and cried—how did she end up here? How could she compete with more experienced, confident architects in the firm? She took a deep breath, went back to her desk, and, to her delight, got asked out to lunch. As a nurse, lunches were taken to go, and eaten stand-ing up, as quickly as possible. Discussing architecture and beyond over lunch with her new coworkers, Ann felt that she’d finally arrived.

In the medical profession, says Ann, the work is so stressful that the staff clings to routine. Innovation, she says, must come from outside. As a nurse turned architect, Ann brought a unique perspective to the field of healthcare design—she examined the problem from the inside and out, and bridged the divide between doctors and architects. As a nurse, she al-ways felt that healthcare facilities worked against, rather than with her. As an architect, she found the rare opportunity to transform healthcare facilities into more efficient, pleasant environments for nurses and patients alike—“I was still tak-ing care of people,” she says, “just in a different way.”

Although she had to scale back her concept of making a difference—change in healthcare design didn’t happen as quick-ly or dramatically as she would have liked—Ann loved working at Ratcliff. As a nurse, she was surrounded by stressed out, unhappy people. As an architect, she found herself in the company of well rounded, creative people with plenty of

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outside interests. After a long nursing shift, she says, all you want to do is put your feet up. Ann hopes that her architec-tural work helped create less stressful working environments for nurses. Although she left Ratcliff years ago to raise two children, her youngest is off to college this year, and she’s excited to get back into the field in one way or another. In the meantime, she’s added Master Gardener to her already impressive list of accomplishments. Maybe she’ll return as a land-scape architect with a focus on healing gardens? We’ll just have to wait and see (Finley, 2011).

BEYOND THE MAMMOGRAM ENVIRONMENT

Although many mammography centers have been slow to catch up, a number of healthcare environ-ments have been thoughtfully designed or redesigned. Whether or not they’ve been specifically de-signed for women, these environments should act as an inspirational guide to designers of future mammography centers. Rather than focusing their image on cancer treatment, breast centers should promote a sense of health and wellbeing. Why not learn from and incorporate the positive atmosphere of birthing units, or the playful, less intimidating environments at children’s hospitals?

Southwest Washington Medical Center, Vancouver, Canada A team of architects and designers from the firm NBBJ spent nine months observing the hospital experience from the point of view of patients, visitors, and medical professionals. The team went as far as pushing around one of the firm’s partners in a gurney, as well as following a surgeon’s footsteps for a day. With the help of their in-house anthropologist, NBBJ addressed the issue of “how to ame-liorate the fear factor.” They replaced the existing parking lot with a garden, and moved parking under-ground. They created a lobby worthy of a five star hotel and a café with a wine bar feel, and replaced stark whites and greens with a warm cream and pale teal color palette. Floors were carpeted (with anti-microbial material) to minimize noise, and curtains in patient rooms were replaced with frosted film sliding glass doors. The firm installed sleeper sofas for overnight guests, and benches outside of each doorway. While nurses and doctors attend to their patients, visitors have a comfortable place to wait, day or night—each bench is illuminated from below by hidden fluorescent fixtures (Cohen, 2008).

Winnie Palmer Hospital for Women and Babies, Orlando, FL Dallas-based healthcare architecture firm Jonathan Bailey Associates designed a nature inspired facility with the intent of creating “a destination for women before they need to come here for medical rea-sons, so that when they get pregnant and come back to deliver their babies, they have great memories of a pleasant, nurturing atmosphere.” Instead of the traditional ‘racetrack’ model, nursing units were arranged in a ‘clover leaf ’ model. Three circular nursing unit modules with 10 to 12 beds each were clustered around a central elevator. In this way, gross floor area was reduced, minimizing the distance between patients and nurses, who typically spend 24 to 33% of their time walking an average of 2.7 miles per day. Massive corridors were eliminated and the number of elevators was increased, which not only reduced physical strain on nurses, but also allowed architects to allocate financial resources toward high-end amenities. The designers opted for curvilinear and sculptural forms, as well as indirect cove lighting and retractable artwork to conceal hospital equipment: “Unlike the existing, heavy, masculine,


brick buildings on the campus, the Winnie Palmer hospital is a signature, flower-like structure that expresses a sense of femininity” (Nayar, 2006). Constance Brookes, a breast cancer survivor treated at Winnie Palmer, praised the high quality of care that she received: “In all my experiences and treat-ments at MD Anderson–Orlando they treated me with white kid gloves. There was never enough they could do for you. Everyone was always so optimistic and 'up'" (Orlando Health, n.d.).

The Children’s Hospital (TCH) of Denver, CODesigned by Portland, OR based Zimmer Gunsul Frasca Architects (ZGF), TCH’s mission was “to create a healing hospital, not merely a treatment hospital.” With Colorado geography as its muse, ZGF created five unique color palates: community, social, spirited, tranquil and work. Patient rooms were equipped with sleeper sofas, storage space for personal items, flat screen televisions, internet access, on demand movies, and full private baths (Richmond, 2008).

Sentara Norfolk General Hospital, Norfolk, VASentara hospital hired Omaha, NE based HDR Architecture to consolidate cardiac services that were spread over five different buildings into one innovative facility. HDR built a lobby with floor to ceiling windows and a two-story water wall. Natural light, natural wood, and warm toned colors dominate the facility. Inspired by hospitality environments, HDR revamped interior lighting throughout the hospital. Direct/down lighting was replaced by cove lights that project toward the ceiling, especially in areas where patients lay flat on their backs. Florescent lights and two by four lay-in ceilings were replaced by stepping and drywall, as well as details to make the ceiling more interesting (Tisch, 2007).

Etc. Countless other hospitals exemplify excellence in patient-centered care design. Banner Estrel-la Medical Center in Phoenix, AZ has patient rooms with computer screens and keyboards—attached to beds and armrests—for patient and caregiver use (Burnett, 2005). Alegent Lake-side Hospital in Omaha, NE has a healing garden, stained glass windows, and homey décor (Nieminen, 2007). Janet Sinegal Children’s Hospital & Regional Medical Center in Seattle, WA has stylized animal sculptures that help children feel more comfortable (Healthcare Design, 2005).

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BEYOND THE HEALTHCARE ENVIRONMENT

Design for healthy behavior: Bakar Fitness Center, UCSF, San Francisco, CAA little over a year ago, I joined the Bakar Fitness Center at UCSF’s Mission Bay campus. After almost ten years of living near and running in Golden Gate Park, I’d just moved across town to the Excelsior district. I kept running, this time along a eucalyptus lined fire trail in McLaren Park. I ran alone, with headphones on, and rarely saw anyone else on the trail. When a young woman was assaulted in broad daylight in a much less secluded area of the park, however, I felt the need to relocate my exercise re-gime. Thus, the new gym membership. I’ve always hated the gym—it feels counter intuitive to exercise inside, and I relish in the solitary, meditative nature of running. The Bakar Center, however, with its bright colors, open vistas, and ample natural light, has become a place I look forward to returning to over and over again.

The Bakar Center, designed by the Mexican architect Ricardo Legoretta, was completed in 2005. Ac-cording to Legoretta’s website, the center maintains the “rigid architectural requirements” of a medi-cal research center, while also creating a “social hub of the community, where students and lectur-ers…interact.” The building, which houses a gym, convention center, café, library, etc., is “full of color and light” (Legoretta + Legoretta, n.d.). Born in 1931, Legoretta is known for the Camino Real hotel, which was built in his hometown of Mexico City in 1968. The hotel, with its “bright colors, massive solid walls, courtyards and geometric cutout windows to interact with Mexico’s abundant sunlight,” exemplifies Legoretta’s style. Greatly influenced by Luis Barragán, his fellow Mexican architect and friend, Legoretta’s success was not limited to his native country. Outside of Mexico, he worked pre-dominantly in the western and southwestern states of the US (Salon.com, 2011).

In a 2001 interview with the American architect James Steele, Legoretta, who died in 2011, describes Luis Barragán’s influence on his life and work. “I never studied with him,” says Legoretta, “because he didn’t teach at any University, but he meant a great deal to me. I met Luis Barragán when he was nearly 73, and we developed more of a friendship than a professional relationship.” Barragán, an engineer by training and self-taught architect, taught Legoretta “to enjoy life,” and that “spaces have a very special objective, and that if the tea is not served right it is important; that small details should always be cor-rect.” Of course, says Legoretta, Barragán also “had wonderful taste, and a sense of proportion and space.” Barragán introduces Legoretta to prominent Mexican painters and muralists, such as Chucho Reyes and Tamayo. These artists, says Legoretta, taught him “the process of looking rather than un-derstanding Mexico.” Like Barragán, Legoretta’s hopes to give his buildings a timeless quality, which “capture[s] the national spirit.” Legoretta sees the American west and southwest as an extension of his native Mexico, with similar “climate, light, and lifestyle” (Steele, 1991).


DESIGN RESPONSE

If Legoretta’s architecture gets me to the gym, could good design get me to my first mammogram? The American Institute of Architects (AIA) supports my belief that good design can, in fact, promote healthy behavior. In 2006, the New York chapter of the AIA, AIANY, launched an annual “Fit City” conference to “rethink the planning, architecture, and design of our metropolis, with the goal of en-couraging physical activity and healthy lifestyles.” Fit City, which brings together stakeholders from fields such as public health, education, and design, poses the issue of childhood obesity as an urban “emergency.” At the fifth annual conference in 2010, AIA president George Miller announced that “43 percent of elementary school children are overweight or obese, and diabetes rates are climbing, driving health-care costs up and life expectancies down. Clearly, a shift in mind-set is needed” (Szenasy, 2010).

Also in 2010, Fit City launched a series of Active Design Guidelines, available free for download at the city of New York’s website, www.nyc.gov. The guidelines, which include urban and building design strategies, “provide architects and urban designers with a manual of strategies for creating healthier buildings, streets, and urban spaces, based on the latest academic research and best practices in the field.” Architects and urban reformers in the 19th and early 20th centuries, says the AIA, helped end cholera and tuberculosis epidemics. Today’s designers, like their predecessors, have a responsibility to create healthier cities and, in turn, promote public health. Many of the guidelines seem self-evident—outdoor spaces that encourage walking and bicycling, stairs in addition to elevators, etc. But as long as public health continues to decline in our urban centers, designers be reminded of the obvious. As sus-tainable design gains mainstream appeal, so should design for healthy living (AIANY, 2010).

Inspired by Legoretta’s fitness center, whose bold and bright design encourages me to work out more often, and rewards me again and again with a visceral, not just physical response, I propose the follow-ing design guidelines for mammogram environments of the future:

• Natural light• Large windows• High ceilings• Generous use of color• Views (both natural and urban)• Healing gardens

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And inspired by retail, hospitality, and spa design, I propose the following guidelines:

• Warm and welcoming reception/ waiting area• Private changing rooms• Calming lighting—dimmers, etc.• Machinery to fit the space, not visa versa• Green cleaning products/ aromatherapy

Self-evident, yes, but until all breast health environments encourage women not only to get screened for the first time, but also to return for regular screenings, we as designers need to begin with the basics.


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IMAGING TECHNOLOGY


What if mammogram technologists shared visual information with

patients throughout theexam? Rather than just transmitting

images to behind the scene radiologists, why not include women in the process,

thereby alleviating the fear of the unknown?

41Imaging Technology

DEFINITION

A mammogram is an X-ray picture of the breast.

Mammograms can be used to check for breast cancer in women who have no signs or symptoms of the disease. This type of mammogram is called a screening mammogram. Screening mammograms usually involve two X-ray pictures, or images, of each breast. The X-ray images make it possible to detect tumors that cannot be felt. Screening mammograms can also find microcalcifications (tiny deposits of calcium) that sometimes indicate the presence of breast cancer.

Mammograms can also be used to check for breast cancer after a lump or other sign or symptom of the disease has been found. This type of mammogram is called a diagnostic mammogram (National Cancer Institute, n.d.).

HISTORY OF MAMMOGRAM IMAGING TECHNOLOGY

The history of mammography dates back to 1895, when William Roentgen, a German physicist, discovered X-rays. In 1913, Albert Solomon, a surgeon in Berlin, used a conventional X-ray machine to create images of breast cancer from 3000 mastectomy specimens. Although Solomon’s images were successful, the practice later known as mammography did not gain acceptance in the surgical community for decades to come. In the late 1960s, Charles Gros, a French physician, developed the Senographe, the first dedicated mammogram machine. Also in the late 1960s, the American radiologist Philip Strax conducted the Health Insurance Plan (HIP) of New York study, in which he compared the outcomes of women who received only clinical breast exams to those of women who received clinical exams as well as mammograms. Results of the study, published in the Journal of the American Medical Association (JAMA), were the first to suggest that early detection through mammography reduces the risk of breast cancer mortality.

By the 1970s, mammography had become the standard method for breast cancer screening. Although new breast screening technologies have emerged—ultrasound in the late 1970s, and Magnetic Resonance Imaging (MRI) in the 1980s—mammography is still the only technology that can detect microcalcifications in the breast. Digital mammography, introduced in the 1990s, is the most widely used screening tool today. Although digital mammography still exposes patients to risks associated with radiation, doses today are far lower than they were when the technology was first introduced (Van Steen & Van Tiggelen, 2007). In 2011, the US Food and Drug Administration (FDA) approved the first mammography device to provide three-dimensional images of the breast. The Selenia Dimensions System, meant as an upgrade to the widely used two-dimensional system by Hologic Inc., provides both 2D and 3D images. Although Selenia’s system doubles the amount of radiation a patient receives, the system also increases accuracy, thereby decreasing the number of women called back for additional testing (Health Day News, 2011).



WHY REDESIGN MAMMOGRAM IMAGING TECHNOLOGY?

As the debate over mammography continues—begin screening at age 40 or 50? Screen annually or biannually?—there’s one factor that nearly everyone can agree on: mammography is the best mass screening tool available to women today. And although research shows that regular screenings confer only a small benefit to women under fifty, “what may be a marginal benefit epidemiologically may not be perceived as such by an individual” (Finkel, 2005). Because my mother was diagnosed at 48, I understand that a “small epidemiologic benefit,” when experienced in a real world context, translates to an actual, individual life. Mammography may be an imperfect tool, but as long as it’s the most widely used screening method, why not work to improve it?

CASE STUDY

MammoPad: Gail Lebovic and BioLucent, Inc.Gail Lebovic, MD, leading breast surgeon at the Keck School of Medicine at the University of Southern California (USC), has made it her life’s work to improve breast healthcare for all women. Lebovic, the child of Czech immigrants, was deeply affected as a child by the death of a close family friend diagnosed with breast cancer. Although dissuaded from pursuing a career as a surgeon, Lebovic ignored expert advice to chose a more “female-friendly field, like obstetrics or gynecology.” When she first went into surgery, there was no subspecialty in breast surgery, and breast health was barbaric at best. Women were often subjected to disfiguring operations, with no concern for subsequent emotional distress. In her quest to minimize disfigurement from surgery, Lebovic added plastic surgery to her already impressive set of skills. Incorporating reconstruction into the surgical process, says Lebovic, “reinforce[s] the belief that you can take a tumor out effectively, using an aesthetic approach. In Europe they use the term oncoplastic surgery. It’s all about planning ahead.”

After years of listening to her patients complain about painful mammograms, Lebovic focused her attention on creating a more comfortable mammogram experience. In collaboration with BioLucent, Inc., Lebovic spent two years designing the Woman’s Touch MammoPad, a disposable cushion placed on the mammogram machine before the exam. The MammoPad, which reduces pain and cold during compression, “looks deceptively simple, like a mouse pad.” The pink, rectangular piece of foam, however, “is incredibly complex. The key was to develop a product that decreased pain, but didn’t affect the X-ray image.” Lebovic and BioLucent tested the MammoPad at Falun Central Hospital in Sweden, workplace of mammography pioneer Laszlo Tabar, MD. A majority of the 1000 Swedish women tested during the clinical trials reported that the MammoPad cut the pain of mammography in half. Tabar also noted no difference in the quality of images taken with or without the MammoPad. “Our hope,” says Lebovic, “is that by decreasing pain, we can increase compliance with mammography screenings.” Over 1500 mammography centers now use MammoPads, which cost hospitals about $4 each (DiRado, 2004).


The MammoPad, though ingenious, is not without its imperfections. For one thing, of the many women I spoke to over the course of this project, none had heard of it. During a site visits to UCSF, I asked Carol Sperber, the mammogram technologist touring me around the facilities, if she used MammoPads. She unlocked a cabinet to reveal stacks of MammoPads, which, she said, were available only by request. When I asked why the pads weren’t used for everyone, she said it was due to expense. If the pads really reduce pain by 50%, I said, wouldn’t most women be willing to pay an extra $4? The cost of the pads, said Carol, would be passed onto the hospital, not the patient, and the hospital has to save money wherever possible (C. Sperber, personal communication, November 22, 2010).

On another site visit to UCSF, this time as an observer of my mother’s mammogram, her tech, Catalina, used a MammoPad. After learning about the pads through my research, my mother had called ahead to request one. Catalina said she used the pads often—especially for women with small breasts, and for women with post-surgical sensitivity (personal communication, March 22, 2012). If techs are under financial pressure from hospitals not to use the pads, however, and most women are unaware of their existence, then Lebovic’s thoughtful innovation is wasted by under use. And even if requested, the pads are single use, and often end up in the trash. After my mother’s mammogram, Catalina gave me the MammoPad to use as an example for my project. Although BioLucent claims that the pads are recyclable—some are even made into rug padding—the realities of hospital sanitation and medical liability apparently send most MammoPads right to the landfill.

BEYOND MAMMOGRAM TECHNOLOGY

Nurse Knowledge Exchange: IDEO for Kaiser Permanente In 2005, IDEO, the Palo Alto based design firm and consultancy, worked with Kaiser Permanente to “optimize the nursing shift change process within its own hospital network.” After close observation, IDEO identified the following key issues within the shift change process: “schedules, software, information hand-offs, and patient interactions.” Working directly with Kaiser’s nurses, IDEO developed “a system of solutions that could be customized and implemented by the nurses themselves with no risk to patients or staff.” Among other innovations, the system includes a digital screen attached to the patient’s bed, on which nurses can input information throughout the shift. The screen, which helps nurses efficiently record and share information with each other, is also viewable by patients themselves. Thus, patients are included in the information sharing process, making them feel more empowered and in control in the midst of an otherwise vulnerable situation. In 2006, inspired by the successful implementation of IDEO’s program, Kaiser opened an innovation center in Oakland, California to keep the creative momentum going (IDEO, 2005).

What if, like nurses at Kaiser, mammogram technologists shared visual information with their patients throughout the exam? Rather than just transmitting images to behind the scene radiologists, why not include women in the process, thereby alleviating the fear of the unknown? What if screens displayed relative levels of pressure throughout compression, giving women a better idea of how much more


pain they’d have to endure, and how long it would last. Some women in my ‘unfocus’ group wanted to control compression themselves, while others wanted to close their eyes until it was over. Why not design a rotating screen, that could be easily turned toward or away from the patient, allowing for individual preference?

BEYOND HEALTHCARE TECHNOLOGY

Although mammograms today are more effective and less intimidating than they were in the past, the machinery itself can still be daunting. Bithia Rosales, a friend and coworker who had a mammogram in her early thirties, said “the machine felt like a mechanical monster.” Measuring just over five feet, Bithia said that the machine, although adjustable, did not go low enough to reach her. The technologist gave her phone books to stand on, making her experience not only frightening and unpleasant, but also infantilizing (B. Rosales, personal communication, 2011). The women in my ‘unfocus’ group complained about the plates on the machine—they were cold, and hard edges cut into their rib cages. Everyone, of course, complained about the pain of compression. As Carol, technologist at UCSF, says, “compression is key” to creating readable images. Although the pain of compression may be unavoidalbe, much could be done to improve existing mammogram machines.

Other products associated with the female breast, such as baby bottles, have already been redesigned with greater curvature, giving nursing babies a more comfortable, natural bottle feeding experience. If babies enjoy breast shaped bottles, why shouldn’t their mothers and grandmothers be screened on a mammogram machine with curved plates, formed, as the women in my ‘unfocus’ group suggested, “to the contours of a woman’s body?” Although plates must be flat for adequate compression, why not curve the edges, to conform to a woman’s rib cage? And something as simple as applying a MammoPad, or technologists washing their hands in hot water, could literally warm up the exam.

Some companies outside of healthcare have succeeded in humanizing technology. Apple products, with their sleek, appealing forms and down to earth user interfaces, now feel natural in a domestic environment, whereas their clunky PC counterparts seem destined for dreary office cubicles. What if mammogram machines learned from Apple, incorporating curvature and personality, while minimizing visible controls? What if mammogram machines could be miniaturized, like iPods, and stowed away in our bathroom cabinets for screening in the comfort of our own homes? Miele, like Apple, has successfully humanized the vacuuming experience. Although vacuuming, like mammography, may never actually be fun, mammogram engineers could learn from Miele’s example. Miele transforms enormous, loud, industrial-looking vacuums into smaller, lighter, quieter, more human-scaled machines.


DESIGN RESPONSE

Inspired by modifications to mammogram machines such as MammoPads, as well as by technology beyond the healthcare environment, I propose the following guidelines for mammogram machine design:

• Curvature• Warmth• Technology to fit the environment, not visa versa• Patient info screens (like IDEO for Kaiser)• Greater patient control• Different positions to accommodate disabled women, shorter

women, older women (sitting, laying down, etc.)

Technology aside, all women I spoke to said that a kind, gentle technologist is the key to a better mammogram experience. That said, a kinder, gentler mammogram machine would make it easier for technologists to perform the exam, and in doing so leave them with more energy for patience and understanding. When I ask Carol what it’s like to deal with patients, she says that, although they’re nervous, most women are understanding and appreciative. She tells them she’s sorry about the pain, but it just is what it is. Although Carol has excellent bedside manner and a great deal of experience and skill, wouldn’t her job be easier if she didn’t constantly have to apologize to patients for the inhumane tools of her trade?



49

OUTREACH


What if, Ehrenreich’s “cult of pink kitsch” was replaced by a more

universally appealing campaign like Thrive, which promotes

health without infantilizing its audience? What if, as groups like Breast Cancer

Action call for, pink ribbonsstood not only for awareness, but also

for real progress and change?

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DEFINITION

Noun1. The act of reaching out.2. The extent or limit of reach.3. The extending of services or assistance beyond current or usual limits<an outreach program>;

also: the extent of such services or assistance.Verb/ Transitive verb

4. A) to surpass in reach B) exceed<the demand outreaches the supply>5. To get the better of by trickery.

Intransitive verb6. To go too far.7. To reach out (Merriam-Webster, n.d.).

HISTORY OF BREAST CANCER OUTREACH

Betty Ford (1918-2011)The history of breast cancer outreach began with Betty Ford, wife of President Gerald Ford and First Lady of the United States from 1974 to 1977. Weeks after her she became First Lady, Ford had a mas-tectomy for breast cancer. Ford responded to her breast cancer diagnosis with unprecedented open-ness: “There had been so much cover-up during Watergate that we wanted to be sure there would be no cover-up in the Ford administration.” (Gibbs, Nancy). Ford’s openness raised awareness about the disease—up until then, breast cancer was considered a private, personal matter, too taboo for public discussion. In an interview for TIME magazine, Ford told reporters: “When other women have this same operation, it doesn’t make any headlines. But the fact that I was the wife of the President…brought before the public this particular experience I was going through. It made a lot of women real-ize that it could happen to them. I’m sure I’ve saved at least one person—maybe more” (Time, 1974).

Ford, an independent spirit who once danced for Martha Graham, was equally outspoken about her support for the Equal Rights Amendment (ERA) and her pro-choice stance. Ford also revealed her struggles with alcoholism to the public, and, in 1982, founded the Betty Ford Center for the treatment of chemical dependency (Encyclopedia Britannica, n.d.).

Rose Kushner (1929-1990)In 1975, following in Betty Ford’s footsteps, Rose Kushner published a book about her own experi-ence with breast cancer. The book, “Why Me? What Every Woman Should Know About Breast Can-cer to Save Her Life,” challenged standard breast cancer treatments of the time. Kushner, a psychol-ogist and medical writer, found a lump in her breast in 1974, but refused the commonly practiced “one-step” procedure. At the time, women were anesthetized for biopsy. If the biopsy showed ma-lignancy, the breast was removed on the spot. Kushner believed that women should be allowed time


between diagnosis and mastectomy to decide on an individual course of action. Kushner called 18 doctors before finding one that would remove only the lump, and took time after the lump was found to be cancerous to find the best surgeon to perform her mastectomy (Kolata, 1990).

Also in 1975, Kushner established the Breast Cancer Advisory Center, a telephone hot line that provided information about breast cancer and its treatment. The Center promoted self help and mutual support, and criticized the medical profession’s role as “gatekeepers” of breast cancer information (Kasper & Fer-guson, 2001). In 1977, Kushner was the only layperson appointed to a National Institute of Health (NIH) panel that evaluated breast cancer treatment options. In 1979, the panel issued a statement condemn-ing the Halsted radical mastectomy. The Halsted method, championed in the late 19th century by Johns Hopkins surgeon William S. Halsted, involved removal of the breast along with the chest muscle below it and nearby lymph nodes. In place of the Halsted method, the panel recommended basic mastectomy as the primary form of breast cancer treatment (Lerner, 2001). Kushner later became an advocate for the increased use of lumpectomy, in which the malignant lump is removed while leaving the rest of the breast intact (Kolata, 1990). In 1986, Kushner was a cofounder of the National Alliance of Breast Cancer Or-ganizations. In 1989, she was appointed to the Breast Cancer Task Force of the ACS. At the time of her death from the disease in 1990, Kushner was lobbying the federal government to require health insurance companies to cover mammograms (Lerner, 2001).

The Pink Ribbon Campaign: Evelyn Lauder (1936-2011)The iconic ribbon symbolizing breast cancer was not always pink. In 1979, Penney Laingen tied yellow ribbons around trees in her front yard in honor of her husband, who had been taken hostage in Iran. Laingen’s ribbons, once featured on national news networks, inspired the spread of yellow ribbons across America. 11 years later, yellow ribbons resurfaced to represent American soldiers fighting in the Gulf War. The activist art group Visual AIDS recognized the symbolic power of the yellow ribbon, and changed it to red—symbolizing passion—to represent the “boys at home” dying of AIDS. The red ribbon quickly gained exposure, thanks to glamorous Hollywood stars pinning it to their lapels at award shows. Ribbons then became synonymous with charitable causes—in 1992, the New York Times declared “The Year of the Ribbon” (Fernandez, 2009).

Amidst the various ribbons of the nineties, there was an orange ribbon symbolizing breast cancer awareness. In 1990, Charlotte Haley, a 68 year old granddaughter, sister, and mother of women who had battled breast cancer, conceived the orange ribbon in protest of the fact that only 5% of the Na-tional Cancer Institute’s budget went toward cancer prevention (Theobold, 2012). In 1991, Self maga-zine published its first annual Breast Cancer Awareness Month issue. The issue, guest edited by Evelyn Lauder, senior corporate vice president of makeup giant Estée Lauder and herself a breast cancer survivor, was a great success. The following year, Alexandra Penney, editor in chief of Self, decided to add a ribbon to the breast cancer issue. Evelyn Lauder loved the idea, and promised to put ribbons on cosmetic counters across America. Penney and Lauder approached Haley about her orange ribbon, but were rebuffed for being too commercial. Rather than abandoning the ribbon idea altogether, Pen-ney and Lauder, after consulting their lawyers, changed its color to pink (Fernandez, 2009).

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In 1992, Evelyn Lauder launched the Pink Ribbon initiative: “I was inspired by AIDS activists,” she told reporters. “They were getting a lot of attention, and no one was doing the same for women. I asked how many women get breast cancer, and how many die in a year, and it was twice as many as the victims of AIDS. I started the Breast Cancer Research Foundation. The pink ribbon was our answer to the scarlet AIDS ribbon.” Lauder raised $18 million to set up the Evelyn H. Lauder Breast Center at the Memorial Sloan-Kettering Cancer Center in New York (Ottawa Citizen, 2011), which opened in 2009. Lauder’s pink ribbon led to fundraising products, the congressional designation of October as Breast Cancer Awareness Month, and millions of dollars in donations: “There had been no publicity about breast cancer,” she said, “but a confluence of events—the pink ribbon,…having Estée Lauder as an advertiser in so many magazines and persuading so many of my friends who are health and beau-ty editors to do stories about breast health—got people talking” (Salazar, 2011).

WHY REDESIGN BREAST CANCER OUTREACH?

Since the 2009 amendment to national screening guidelines and the 2011 UCSF study, the initial mes-sage of the breast cancer outreach movement—get a mammogram, save your life—feels outdated and overly simplistic. With conflicting advice from the government, the ACS and the healthcare system at large, what’s a woman to do? Breast cancer outreach organizations, such as the Komen Founda-tion and Breast Cancer Action, have added their own, conflicting points of view to the debate. And now that breast cancer awareness is everywhere, its ubiquity runs the risk of diminishing its message through overexposure. Since it’s unlikely that the various institutions and organizations promoting breast cancer awareness will ever unite in total agreement, the best a woman can do is to stay informed. Pink ribbons have their place, but it’s the knowledge alluded to by outreach campaigns that truly em-powers women to make informed decisions about their own breast health.

CASE STUDIES:MAINSTREAM OUTREACH CAMPAIGNS

Susan G. Komen Foundation: Nancy Brinker (1946—) In 1982, Nancy Brinker established Susan G. Komen for the Cure in honor of her sister, the founda-tion’s namesake, who died of breast cancer at the age of 36. According to the Komen website,

Komen for the Cure is the world’s largest grass roots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, we have invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedi-cated to the fight against breast cancer in the world (Susan G. Komen for the Cure, n.d.).


In addition to races and other events, Brinker has used her ties to the business community to promote the cause-related marketing of numerous “pink” products. She is also the author of the bestselling memoir Promise Me: How a Sister’s Love Launched the Global Movement to End Breast Cancer, which chronicles the loss of her sister, her own experience with breast cancer, and the launching of her career as the most well-known breast cancer activist to date (Brinker, 2010).

Brinker is not only a businesswoman and activist, but also a political powerhouse—from 2001 to 2003, during the Bush administration, Brinker served as US Ambassador to Hungary. From 2007 to 2009, she served as US Chief of Protocol, and in 2008, President George W. Bush appointed her to the Kennedy Center Board of Trustees. Also in 2008, TIME magazine named her one of the “100 Most Influential People” (Susan G. Komen for the Cure, n.d.).

In February of 2012, the Komen Foundation’s decision to stop funding Planned Parenthood was met with fury and debate. The Foundation quickly reversed its decision, thanks in part to an outpouring of criticism on social networking platforms such as Twitter and Facebook. Thousands of people also signed a petition on the progressive site MoveOn.org, urging Komen to continue funding Planned Parenthood (Kleffman, 2012). A group of US senators urged Komen to reverse its decision in a letter pointing to the fact that Planned Parenthood provides 750,000 breast exams each year—the very cause that Komen supports (Walker, 2012). Planned Parenthood, which is used by one in five women na-tionwide, raised $650,000 in the 24 hours after Komen’s decision was announced. In a statement to the press, the Komen Foundation said “We want to apologize to the American public for recent decisions that cast doubt upon our commitment to our mission of saving women’s lives.”

Conservatives and pro-life groups, however, defended Komen’s initial decision, and were disappointed by its reversal. In a statement to the Washington Post, Sen. David Vitter, R-La, said “Unfortunately, it seems that Komen caved to political pressure from the pro-abortion movement and enforcers in the media” (Kleffman, 2012). The Catholic Church, long allied with Komen, was instrumental in pressuring the foundation to cut off funding to Planned Parenthood. In 2011, 11 bishops from Ohio announced a statewide ban on church funding to Komen. “In today’s world,” said Bishop Leonard Paul Blair of To-ledo, "there are a lot of entanglements of many things, and one has to exercise a certain prudence about standing firm on principle and church teaching and the moral conscience.” Catholic institutions, however, continue to accept funding from the Komen Foundation—$7.4 million in 2011 alone, while Planned Par-enthood only received $684,000 in the same year. “It is morally inconsistent, and difficult to explain,” said Arthur Caplan of the University of Pennsylvania’s Center for Bioethics, “why you would condemn dona-tions but continue to accept grants. It makes no ethical sense at all” (Reuters, 2012).

The Avon Foundation for Women: Avon Breast Cancer CrusadeFounded in 1955, The Avon Foundation for Women is one of the world’s largest corporate affiliated philanthropy groups devoted to improving women’s lives. Through 2011, the foundation has donated over $860 million to women’s causes in more than 50 countries. The foundation’s primary cause is the “Crusade” against breast cancer. The Crusade, founded in 1992, has donated over $740 million to

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breast cancer research and programs that promote access to quality breast healthcare. As part of the Crusade, Avon sponsors the Avon Walk for Breast Cancer and the Walk Around the World for Breast Cancer. In addition to these events, Avon raises funds for the Crusade through the sale of Avon “pink ribbon” products. According to the foundation’s website, the Crusade has “enabled more than 17 mil-lion women globally to receive free mammograms and breast cancer screenings, educated more than 100 million women about breast cancer, and funded promising research into the causes of breast can-cer and ways to prevent the disease” (Avon Foundation, 2011).

As participants in the Avon Walk attest, fund-raising events not only support research, but also provide a community for breast cancer survivors and their families. Eloise Caggiano, program director of the Avon Walk and herself a breast cancer survivor, says: “There is such a camaraderie among the survi-vors. You have been through something so traumatic, and you’ve come out the other side. To meet people who are 10-, 15-, 25-year survivors…it gives me such hope. It sounds clichéd, but this is a life-changing weekend” (Pesce, 2011).

The Avon Foundation funds ten flagship comprehensive cancer centers across the country, includ-ing San Francisco General Hospital Medical Center’s (SFGHMC) Breast Clinic. The Breast Clinic at SFGHMC was founded in 2004, in partnership with UCSF “to achieve mutual goals of providing quality health care for the city’s most vulnerable people.” Since its inception, the clinic has provided over 45,000 breast screenings and more than 3,000 breast health procedures to uninsured and/or low-income women in San Francisco. The clinic also runs a mobile mammography outreach van. The van, established by UCSF’s Mt. Zion Breast Care Center, is “now a key component of [SFGHMC’s] overall effort to ensure that all the women of San Francisco can obtain timely screening services” (San Fran-cisco General Hospital Foundation, n.d.).

National Breast Cancer Awareness Month National Breast Cancer Awareness Month (NBCAM) was founded in 1985 through a partnership be-tween the ACS and the pharmaceutical division of Imperial Chemical Industries (Now part of Astra-Zeneca, maker of breast cancer drugs such as Tamoxifen). NBCAM, held every October, is dedicated, in their own words, “to educating and empowering women to take charge of their own breast health. Although October is designated as National Breast Cancer Awareness Month, NBCAM is dedicated to raising awareness and educating individuals about breast cancer throughout the year” (National Breast Cancer Awareness Month, n.d.).

Although NBCAM is affiliated with several prominent breast cancer organizations, including the Ko-men Foundation, critics refer to October as “National Breast Cancer Industry Month.” Organizations such as San Francisco’s Breast Cancer Action (BCAction) point to the potential conflict of interest be-tween corporations such as AstraZeneca sponsoring breast cancer awareness while also profiting from the disease’s diagnosis and treatment (Breast Cancer Action, 2012).


Look Good Feel BetterLook Good Feel Better (LGFB) was founded in 1989 as a partnership between the Personal Care Products Council, The Professional Beauty Association (PBA), The National Cosmetology Associa-tion (NCA), and ACS. According to their mission statement, LGFB “is dedicated to improving the self-esteem and quality of life of people undergoing treatment for cancer…through complimentary group, individual, and self-help beauty sessions that create a sense of support, confidence, courage, and community.” The program launched with two group workshops at Memorial Sloan- Kettering Cancer Center in New York and Georgetown University’s Lombardi Cancer Center in Washington, DC.

Although LGFB touts itself as a “non-medical, brand-neutral public service program,” their long list of corporate sponsors, which includes Dior, Clarins, and InStyle (Look Good Feel Better, n.d.), sug-gests great potential profit for the beauty industry.

CASE STUDIES: OUTREACH CAMPAIGNS CRITICAL OF THE MAINSTREAM

Breast Cancer ActionBreast Cancer Action (BCAction) was founded in 1990 by Elenore Pred, a breast cancer patient en-raged by “government agencies and organizations that provided inadequate and superficial informa-tion rather than scientific evidence about breast cancer.” Although Pred died of the disease in 1991, BCAction has become a national organization “at the forefront of the breast cancer activist move-ment.” BCAction is “a grass roots organization comprised of women with breast cancer and their sup-porters—ordinary people who, by educating themselves on the facts and the issues related to breast cancer, have empowered themselves and others to created needed change.” Rather than just raising awareness, BCAction works to change policy at local, state, and federal levels. BCAction identifies its priorities as:

• Advocating for more effective and less toxic breast cancer treatments by shifting the balance of power in the Food and Drug Administration away from the pharmaceutical industry and toward the public interest.

• Decreasing involuntary environmental exposures that put people at risk for breast cancer.• Creating awareness that not just genes, but social injustices — political, economic, and racial

inequities—lead to disparities in breast cancer outcomes (Breast Cancer Action, 2012).

Barbara Brenner, a former attorney and member of the board of the American Civil Liberties Union (ACLU), served as BCAction’s executive director from 1994 to 2010. Diagnosed at 41, Brenner left a promising legal career to become a full-time activist. Brenner said that she was “well aware that, hav-ing breast cancer so young, my time on Earth might be limited. I decided I wanted to do something that would have an impact on women’s health.” Under Brenner’s leadership, BCAction coined the term “pinkwashing” and launched the “Think Before You Pink” campaign (Colliver, 2012).

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Think Before You Pink CampaignIn 2002, BCAction launched the Think Before You Pink Campaign, and the accompanying website thinkbeforeyoupink.org, “highlighting critical questions that consumers should ask about pink ribbon products.” The campaign is critical of Breast Cancer Awareness Month: “So far, the primary effect of BCAM has been to fill October with pink ribbon products to ostensibly raise awareness about breast cancer. Despite billions of dollars raised for the cause, BCAction continues to question how far we’ve really come.” Although BCAction acknowledges the pink ribbon campaign’s success in “eliminating the stigma of breast cancer,” they warn consumers to be weary of the real motives of corporate phi-lanthropy: “the corporate takeover of the pink ribbon campaign has so narrowly focused popular at-tention on awareness that prevention continues to be overlooked.”

Many of the corporations who profit from their association with the cause, including cosmetic companies such as Avon and Estée Lauder, are themselves contributing to the cause of breast can-cer by marketing products that contain known carcinogens. BCAction criticizes such companies for “pinkwashing”—“using pink ribbons as a distraction…to divert our attention away from the root causes of the disease” (Breast Cancer Action, 2012). BCAction has also successfully targeted car man-ufacturers Ford, Mercedes, and BMW for selling cars to raise money for breast cancer, which in turn create air pollutants that cause cancer. They also targeted Yoplait yogurt maker General Mills for put-ting pink lids on yogurt made from milk containing the hormone rGBH, which has been linked to breast cancer. In 2010, when the Komen foundation partnered with Kentucky Fried Chicken on a “pink bucket” campaign, BCAction launched its “What the Cluck?” petition, urging consumers to let Komen and KFC know that they opposed pink ribbon packaging for high fat foods, which have been linked to cancer risk (Westervelt, 2011).

In 2012, BCAction launched a Think Before You Pink Toolkit, which guides readers through detailed steps under the categories: Learn, Share, Act. The toolkit, which contains sample letters to pinkwash-ing companies, urges women not just to spread awareness, but also to get involved in the politics of breast cancer: “Less pink, more action, because action speaks louder than pink.” The toolkit also con-tains a quiz, which tests readers’ understanding of “the pink ribbon industry.” Of the many revealing questions, this is the most shocking:

Q: “Can you guess which of the following is not a true pink ribbon item, i.e., it was not marketed to customers with the claim that the company was donating profits to breast cancer awareness?”

a. Pink bottle of vodkab. Pink handgunc. Pink buckets of fried chickend. Pink beer pong tablee. Pink lip gloss

A: They all are! (Breast Cancer Action, 2012).


Pink Ribbons, Inc. Book by Samantha King; Documentary by Lea PoolIn 2006, Samantha King, a professor of kinesiology and health studies at Queen’s University in Kings-ton, Ontario, published the book Pink Ribbons Inc.: Breast Cancer and the Politics of Philanthropy. In the book, King questions the commercialization of the breast cancer movement. The book was well re-ceived by breast cancer activists, including Barbara Brenner, former executive director of BCAction. Said Brenner, “Breast cancer advocacy is being transformed from meaningful civic participation into purchasing products. To understand the personal, social, and political costs, read this book” (King, 2008).

In 2012, Lea Pool, a Swiss-born director living and working in Montreal, released the documentary Pink Ribbons, Inc. based on King’s book. Pool was inspired not only by King’s book, but also by femi-nist social critic Barbara Ehrenreich’s 2001 article for Harper’s magazine, “Welcome to Cancerland: A mammogram leads to a cult of pink kitsch.” In the film, Pool interviews authors such as King and Ehrenreich, but returns again and again to ordinary, pink-clad women participating in mass marches organized by corporations to raise funds for breast cancer research. “I was moved by what I saw,” said Pool, “and I also had to be careful, because each story is special and all these women are doing these walks for a reason I can understand—the solidarity between women is very strong, and I didn’t want to destroy that.” While she respects the motives of these ordinary women, Pool’s message is decidedly anti-corporate. Like King, who takes issue with the “tyranny of cheerfulness” that pervades the breast cancer awareness movement, Pool wanted to “show that the image of this disease that’s being pro-jected is not the right image” (Heinrich, 2012).

Pool and her producer, Ravida Din, aim to dispel the feel good, pretty in pink atmosphere of the breast cancer movement. Din, a breast cancer survivor, says “you’ve also got to allow yourself to feel sad and to feel angry and to work for change in other ways.” Pool and Din point to the fact that, while a large portion of the funds raised by pink campaigns go to research, only a tiny percentage of those funds go toward researching prevention or environmental risk factors. Pool and Din also reveal the uncoordinated spending of pink dollars, which leads to overlapping studies and gaps in research (Ca-nadian Press, 2012). As Canadian film critic Linda Barnard says, Pool’s film “ does not slam the women who diligently fundraise every fall, participating in events like Run for the Cure. Rather they are warned to question where money goes and who it helps, being mindful the world isn’t always black and white. Even pink ribbons have shades of grey” (Barnard, 2012).

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EDITORIAL OPINION AND SOCIAL CRITIQUE

“Welcome to Cancerland: A Mammogram Leads to a Cult of Pink Kitsch”Barbara Ehrenreich, 2001In 2001, Barbara Ehrenreich published the article “Welcome to Cancerland: A Mammogram Leads to a Cult of Pink Kitsch” in Harper’s magazine. In the article, Ehrenreich, a celebrated journalist and author, criticizes the “cult of cheerfulness” that permeates the breast cancer awareness movement, “which requires Americans to 'think positively' rather than to take positive action for change.” Ehren-reich, the daughter of a Montana miner and an early activist in the women’s health movement, says that she “can’t imagine getting involved in a problem as a journalist and not wanting to do something about it” (Barbara Ehrenreich, n.d.). Ehrenreich’s article for Harper’s does just that—using her own experience with the pinkification of breast cancer, she takes the personal and makes it political.

While in the changing room, which she describes as “really just a closet off the stark windowless space that houses the mammogram machine,” Ehrenreich is horrified by the “cuteness and sentimentality” of the pink décor that surrounds her. Pink ribbons are only the first of many “assumptions” about her character that Ehrenreich is forced to submit to. “Unfortunately,” says her doctor, “there is a cancer.” With this blunt statement, Ehrenreich feels that she has “been replaced by [the cancer]…this is what I am now, medically speaking.” In her “last act of dignified self-assertion,” she requests to see the slides herself. The treatment path, however, is predefined—she finds herself incapable of “self defense,” and begins a harrowing regime of surgery, radiation, and chemotherapy.

Ehrenreich goes on to discuss the history of breast cancer awareness—from the time when the dis-ease was a “dread secret, endured in silence and euphemized in obituaries as a “long illness,” to today, when it’s “blossomed from wallflower to the most popular girl at the corporate charity prom.” Ehren-reich applauds awareness, but is put off by the “ultrafeminine” commercial climate that surrounds it. Ehrenreich is turned off by girly, pink products, but can understand “the prominence…of cosmetics and jewelry…as a response to the treatments’ disastrous effects on one’s looks.” When Ehrenreich discovers a series of breast cancer awareness teddy bears, however, she’s had enough. Teddy bears, she finds, are only part of the “infantilizing trope” that women with breast cancer are subjected to—one tote bag for patients even includes a “pink striped 'journal and sketchbook' and, somewhat jarringly—a small box of crayons...Possibly,” she muses,

the idea is that regression to a state of childlike dependency puts one in the best frame of mind with which to endure the prolonged and toxic treatments. Or it may be that, in some version of the prevailing gender ideology, femininity is by its nature incompatible with full adulthood—a state of arrested development. Certainly men diagnosed with prostate cancer do not receive gifts of Matchbox cars.


Mainstream breast cancer culture, with its ultrafeminine, infantilizing tendencies, bears no resemblance to the feminist origins of the women’s health care movement that Ehrenreich helped to create. It’s not that feminists don’t want a cure, says Ehrenreich, it’s just that they “demand to know the cause or causes of the disease without which we will never have any means of prevention.” Little research focuses on environmental risk factors, because, as Ehrenreich says, “breast cancer would hardly be the darling of corporate America if its complexion changed from pink to green.”

Ehrenreich takes issue with the “universally upbeat” tone that surrounds breast cancer, in which “un-happiness requires a kind of apology.” She is also put off by the martial language surrounding the disease, in which “treatments are described as 'battling' or 'fighting'…[and] once the treatments are over, one achieves the status of 'survivor.'" The “mindless triumphalism” of this “crusade” language “denigrates the dead and dying. Did we who live 'fight' harder than those who’ve died? Can we claim to be 'braver,' better, people than the dead?” It also turns the breast cancer experience into something noble and redemptive—“a chance for creative self-transformation—a makeover opportunity, in fact.” As an experiment, Ehrenreich posts a statement on the Komen.org message board entitled “angry.” The statement, which includes her annoyance with “sappy pink ribbons,” is met with “a chorus of re-bukes.” Ehrenreich feels like a heretic in the “cult” of optimism surrounding breast cancer, which she describes as “an outbreak of mass delusion, celebrating survivorhood by downplaying mortality and promoting obedience to medical protocols known to have limited efficacy.” Ehrenreich concludes her article with a bang: “This is the one great truth that I bring out of the breast-cancer experience, which did not, I can now report, make me prettier or stronger, more femi-nine or spiritual—only more deeply angry. What sustained me through 'treatments' is a purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with, say, the last smug health-insurance operative, strangled with the last pink ribbon. Cancer or no cancer, I will not live that long of course. But I know this much right now for sure: I will not go into that last good night with a teddy bear tucked under my arm” (Harpers, 2001).

Pink Ribbon Blues:How Breast Cancer Culture Undermines Women’s HealthGayle A. Sulik:, 2010In October of 2010, Gayle A. Sulik published the book Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health. Sulik, a sociologist and professor of women’s studies at the State University of New York (SUNY) at Albany, was heavily influenced by Ehrenreich’s 2001 article. In Pink Ribbon Blues, a sort of academic expansion of Ehrenreich’s article, Sulik argues that “the pervasiveness of the pink ribbon campaign leads many people to believe that the fight against breast cancer is progressing, when in truth it’s barely begun.” Like Ehrenreich, Sulik takes her own experience (losing a close friend to breast cancer) and turns it into a political argument: “In making 'problematic' in our research that which is problematic in our lives, researchers’ personal experiences can contribute to their understand-ing of the comparable experiences of those studied…Pink ribbon culture is problematic. This book explains why.” Although less accessible than Ehrenreich’s article, Pink Ribbon Blues is a necessary coun-terpoint to Nancy Brinker’s memoir, Promise Me: How a Sister’s Love Launched the Global Movement to End Breast Cancer, which was published the same month.

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Dr. Susan Love’s Breast BookSusan Love, 2003Susan Love, MD, is a well-known breast surgeon and breast cancer activist. Love, a clinical professor of surgery at the David Geffen School of Medicine at UCLA, is also the president and medical direc-tor of the Susan Love, MD, Breast Cancer Foundation in Santa Barbara, CA. Love is the author of Dr. Susan Love’s Breast Book and Dr. Susan Love’s Menopause and Hormone Book (Webmd, n.d.).

Love is an outspoken supporter of the new, biannual mammogram guidelines, noting overexposure to radiation and the prevalence of false positives as reasons not to screen annually. The old recommen-dations, says Love, “far from being scientifically based, were based on lobbying by interested parties seeking to support a public view which exceeded science.” Love applauds the so-called “rationing” of mammography: “Are these new guidelines rationing? You bet. They are an example of exactly how we need to ration health care, based on science” (Love, Huffington Post, 2012). Although mammography is an imperfect screening method at best, Love posits that “it is still the best tool we have.” However, she encourages researchers to look beyond screening and treatment, and to focus their energy on ac-cessible healthcare and prevention (Love, NY Times, 2012): “the best way to improve the healthcare of all women and to prevent deaths from breast cancer is not supporting screening that is not effective but rather a healthcare reform that covers all with evidence based medicine” (Love, Huffington Post, 2012). Love looks to the HPV vaccine for inspiration: “Today, my daughter can get a vaccine to pre-vent cervical cancer. I want to do the same for breast cancer.”

As part of her efforts, Love’s foundation has signed up over 300,000 healthy women to the Love/Avon Army of Women. At the armyofwomen.org, volunteers participate by email in studies that ex-amine the preventative potential of diet and exercise, etc. (Vaccariello, 2009). Although Love’s opin-ions oppose those of mainstream breast cancer organizations (Komen, etc.), her association with the Avon Foundation ties her inexorably back to the mainstream. With Avon footing the bill, is she really as independent a thinker as she claims to be?

BEYOND BREAST CANCER OUTREACH

Kaiser Thrive CampaignKaiser Permanente launched its Thrive campaign, created by Campbell-Ewald, in 2004. New York Times design critic Allison Arieff notes that the campaign “posits Kaiser less as a medical/institutional service than a lifestyle.” The campaign’s message, says Arieff, “is not how well Kaiser will care for you when you’re sick, but rather how Kaiser helps deliver wellness and can enhance the quality of your life.” Visually compelling print and TV ads, she says, aren’t just a front. Thrive promotes KP Innova-tion, a successful overhaul not only of Kaiser’s image, but also of its facilities and delivery of care. The “Total Health Environment” program, begun in 2007, “app[lies] design thinking to every aspect of Kaiser’s operations, from medical records to medication administrations, color palettes to carpet.” Although innovation in healthcare is hardly a new idea—Arieff notes the Mayo clinic as an example—Kaiser, the nation’s largest nonprofit health plan, reaches far more people.


In addition to the “Total Health Environment” program, KP Innovation identified 22 key experiences of the “Total Health Journey.” As described by Arieff, the Journey

...touch[es] on each moment of the patient’s experience, from the approach to the facility to the route down the corridor to any stop made along the way, whether at check-in, in an exam room, or at the cafeteria, pharmacy or bathroom. The design solutions that emerged include things as seemingly obvious as clearly marked signage; stairwells that might actually encourage people to take the stairs (and remove the fear that anyone who does so might end up locked in between floors); the creation of outdoor spaces that provide escape and respite, not to men-tion natural light; transforming typically unwelcoming cafeterias to more people-friendly cafés; and an exam room that emphasizes comfort, privacy and personal control (Arieff, 2009).

DESIGN RESPONSE

Breast cancer awareness campaigns, such as the now ubiquitous pink ribbon, could learn a thing or two from Kaiser’s example. What if, Ehrenreich’s “cult of pink kitsch” was replaced by a more universally appealing campaign like Thrive, which promotes health without infantilizing its audience? What if, as groups like Breast Cancer Action call for, pink ribbons stood not only for awareness, but also for real progress and change? I propose the following design guidelines for breast cancer outreach campaigns:

• Push audiences to think beyond pink: As Ehrenreich says, what if breast cancer campaigns changed their “complexion…from pink to green?”

• Stay informed, don’t include companies guilty of pinkwashing.• Treat the audience with dignity and respect…no teddy bears!• Encourage audiences to think beyond awareness: thanks to early

pioneers in the campaign, we’re all aware of breast cancer. Now is the time, as Breast Cancer Action advocates, to make real progress toward eradicating the disease.

• Promote prevention, not just screening and treatment.• As with Kaiser’s Thrive campaign, awareness campaigns should not

exist independently. Campaigns should foster and support real ac-tion and progress.

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65

ACCESSIBILITY


Designing for the constraints of disability...will not only improve life for the disabled, but also “catalyze new

design thinking” in the field as a whole.

67Accessibility

DEFINITIONS

Accessible1: providing access2a : capable of being reached <accessible by rail>; also : being within reach <fashions at ac-cessible prices> b : easy to communicate or deal with <accessible people>3: capable of being influenced : open <accessible to new ideas>4: capable of being used or seen : available <the collection is not currently accessible>5: capable of being understood or appreciated <the author’s most accessible stories> <anaccessible film>— ac·ces·si·bil·i·ty noun— ac·ces·si·ble·ness noun— ac·ces·si·bly adverb (Merriam-Webster, n.d.).

Universal design is an inclusive philosophy that says all spaces should be inherently ac-cessible for all users. Rather than focusing on users with specific disabilities, universal design creates solutions that will work for everyone, regardless of age, mobility, visual, auditory or mental ability. The range of human capability throughout the life span is the driving force of universal design philosophy. As many universal design experts like to say, universal design is 'cradle to grave' design; in other words, design that addresses the needs of every stage of hu-man life (Zimmermann, 2006).

Universal design differs from accessible design, in that accessible design de-scribes a site, building, facility, or portion thereof that complies with the minimum accessibil-ity standards as set forth under the Americans with Disabilities Act, Architectural Barriers Act or local building code. Accessible Design has the distinct purpose of meeting the envi-ronmental and communication needs of the functional limitations of people with disabilities. Accessible design aims at minimum requirements to achieve usability. Universal Design is the design of products and environments to be usable by all people, to the greatest extent pos-sible, without the need for adaptation or specialized design (Skulski, 2007).


HISTORY:OF ACCESS TO MAMMOGRAPHY;OF THE DISABILITY RIGHTS MOVEMENT

Racial inequity and mammographyIn 2012, the Sinai Urban Health Institute released results from a study examining racial disparity in breast cancer mortality. The study, funded by the Avon Foundation for Women, found that “five black women die needlessly per day from breast cancer in the United States.” Researchers concluded that societal issues such as poverty and racial inequity, not genetic factors, are to blame (NewsRX, 2012). Although white women are more likely to get breast cancer, black women are more likely to die from the disease—by 2007, according to ACS, death rates were 41% higher among African American wom-en than among white women. This racial disparity is primarily due to the fact that black women tend to be diagnosed at later stages of the disease, when treatment is less effective. The study “calls for a public commitment to making access to quality breast healthcare, from screening to treatment, avail-able to all women, regardless of their ability to pay.”

Although income is a significant factor, with a large portion of the African American population living in poverty, psychological barriers also exist. Regina Hampton, a breast surgeon at the Capital Breast Care Center in Washington DC, works primarily with uninsured black women. Because of the black community’s historical lack of access to the healthcare system, says Hampton, many women don’t seek help until they’re seriously ill. “What I hear from my patients,” says Hampton, “is that they’re afraid.” In the black community, says Hampton, breast cancer is often seen as certain death, since most women are diagnosed too late to survive the disease. Eleanor Hinton Hoytt, president and chief executive of the advocacy group Black Women’s Health Imperative, says responsibility to others, in addition to fear, keeps black women from taking care of themselves. “Black women invariably put on a mask,” says Hoytt. “We deny our pain, grief and sorrows because we want to project an image of what I call being okay to the world and to our families and community. We put that veil over what bothers us because so many others depend on us being in good health or being okay.” Karen Eubanks Jackson, founder of the Sisters Network, a national organization of African American breast cancer survivors, points to the fact that breast cancer is rarely discussed in media targeted toward the black community. The Sisters Network slogan is “Stop the Silence,” because, says Jackson, “there has been a definite increase in awareness, but the fact is women still are hesitant to speak up, whether to ask ques-tions about the disease itself or to accept the fact that they’ve been diagnosed with it” (Williams, 2012).

The Disability Rights Movement/ Universal DesignAs chronicled by Arlene Mayerson of the Disability Rights Education and Defense Fund (DREDF), the Disability Rights Movement began as a grass roots effort. Although the Americans with Disabili-ties Act (ADA) was not signed into law until 1990, activist groups, inspired by the Civil Rights Move-ment, began their fight in the late 1960s and early 1970s. The movement’s goal, to make “injustices faced by people with disabilities visible to the American public and to politicians,” negates the centu-ries long history of “out of sight, out of mind” segregation of people with disabilities.

69Accessibility

Disability rights were first signed into law in 1973, with the passage of Section 504 of the Rehabilita-tion Act. Section 504 banned discrimination against the disabled in the allocation of federal funds. The law was the first to define disabled people as victims of discrimination: “Previously, it had been assumed that the problems faced by people with disabilities, such as unemployment and lack of edu-cation, were inevitable consequences of the physical or mental limitations imposed by the disability itself.” Section 504 was also the first law to treat all disabled people as a minority group or class, rather than as a series of different interest groups.

During Senate hearings, witnesses included not only those born with disabilities, but also those who became disabled later in life. A Vietnam veteran paralyzed during the war testified that, since bound to a wheelchair, he couldn’t get off the curb or onto the bus, let alone to a job interview. This inaccessi-bility, he said, made him realize that “he had fought for everyone but himself.” A woman who lost her breast to cancer also testified, saying that she had lost her job because of her illness, and couldn’t find a new job because of her health history (Mayerson, 1992).

Ron Mace, an architect, educator, and disability rights advocate, coined the term “universal design.” A student, and later a professor at the School of Design at North Carolina State University, Mace found-ed the university’s Center for Accessible Housing in 1989. Now known as the Center for Universal De-sign, Mace’s federally funded organization has become “a leading national and international resource for research and information on universal design in housing, products, and the built environment” (North Carolina State University, College of Design, n.d.).

WHY REDESIGN ACCESS TO MAMMOGRAPHY?

Mammography, for better or for worse, is the gateway to breast health. If mammograms only cater to able-bodied women, then disabled women are effectively denied the breast healthcare that they de-serve. For example, many women diagnosed with breast cancer undergo lymph node removal, which limits range of motion in the affected arm. Mammogram environments, machines, and gowns should be redesigned with these women in mind.

Discrimination based on race, class, and physical ability makes mammograms inaccessible to many women. With the aging of the baby boomer generation, universal design may finally go mainstream. Universal design’s momentum has inspired me to rethink all aspects of the mammogram experi-ence—from the environment and imaging technology to the hospital gown—with accessibility in mind.


CASE STUDY

Mobile Outreach Vans or “MammoVans”In addition to outreach campaigns, mobile mammography “MammoVans” bring convenient, inex-pensive screening services to under served women. In San Francisco, UCSF’s Mt. Zion Breast Care Center and the Avon Foundation partnered to launch a MammoVan in 2000. The van is equipped with a digital mammography system and connected to an independent GE workstation, where im-ages are downloaded and sent to radiologists for review. The van is now anchored at SFGH, where it is “a key component of [their] overall effort to ensure that all the women of San Francisco can obtain timely screening services” (San Francisco General Hospital Foundation, n.d.).

Many other MammoVan’s are in operation across the country, including Florida’s Kathryn Krick-stein Pressel MammoVan. The Pressel van, founded by the golfer Morgan Pressel, is named after her mother, who died from breast cancer. Says Dr. Rashmi Benda, a radiation oncologist at Boca Raton Regional Hospital, “women are less likely to put off having a screening when the MammoVan makes an appearance at their office or at a place where they gather outside of work” (DiPino, 2010). The van accepts walk-ins, offers $58 screenings for uninsured women, and guarantees results within seven days. Rosalee Morris, who owns her own business and doesn’t have health insurance, said “It’s conve-nient and the ladies are so nice. It costs $200 to $300 to have a mammogram done at a hospital, and I have to take the day off work.” One of the van's mammographers, Melissa Candido, said “a lot of people like coming here because it’s more intimate than the hospital, and they’re in and out” (Patter-son, 2009).

Although MammoVans have successfully screened thousands of women, critics point to the potential problems of mobile mammography. Many vans require a physician referral, which defeats the pur-pose of on the spot mammography. Record keeping and follow up appointments are also problem-atic: “since records are not given to the woman, it is important that a woman getting a mammogram anywhere ascertain where her records are being kept and whether the records are destroyed after a certain period of time. Comparisons with previous mammograms is vital and it makes little sense for a woman to get the much-touted 'baseline' mammogram if it is not preserved for her lifetime” (Off Our Backs, 1987).

BEYOND ACCESS TO MAMMOGRAPHY

Design Meets Disability Graham Pullin, 2009Pullin introduces the Design for Disability with Charles Eames’ belief that “design depends largely on constraints.” Designing for the constraints of disability, argues Pullin, will not only improve life for the disabled, but also “catalyze new design thinking” in the field as a whole. Pullin argues for a move away from the “problem solving” culture of clinicians and engineers, and toward a “more playful” approach to thinking about design for disability. As a medical engineer and design consultant, Pullin's work exemplifies the successful blending of two distinct cultures.

71Accessibility

Design for disability, says Pullin, is an inherently charged subject. Previous definitions of the field, such as Design for Special Needs are patronizing at best. Design for People With Disabilities is inad-equate as well, in that it implies an isolated market. Universal Design is an innovative theory, in that it “seeks to make mainstream design accessible to everyone.” Pullin’s method mirrors his message, in that he looks for inspiration not only from “product designers, but also fashion, furniture, and inter-action designers.” Pullin’s writing style nicely illustrates his desire to move away from the clinical and toward the playful—he “avoid[s] the term user because it sounds too functional.”

In the section "Fashion Meets Discretion," Pullin gives us a series of memorable case studies. Fash-ion, unlike medical engineering, “addresses disability…with little or no social stigma attached.” Rather than hide disabilities, fashion makes them fabulous—glasses, for example, become fashionable acces-sories, worn even by people with perfect vision. Hearing aids, prostheses, and other designs for the disabled, are following suit—in a Bluetooth era, says Pullin, why not make hearing aids stand out as beautiful, jewelry-like adornments? Like glasses, design for disability should not just correct impair-ment, but surpass normal human ability. Pullin turns to Aimee Mullins' designer leg prostheses as examples of design for disability that make the wearer more able—Mullins’ ‘cheetah’ legs turn her into a superhuman athlete, and her high heeled legs, which put her over six feet, inspire envy at cocktail par-ties (Pullin, 2009).

The hospital gown may never be fabulous enough to be worn on the street as a fashion accessory, but a well-designed gown, like Mullins’ designer legs, would bring much needed dignity, comfort, and even beauty to the mammogram experience. And a gown that incorporates principles of universal design—one-handed closures, etc.—would give disabled women a greater degree of independence and control throughout the exam.

Judi Rogers, Through the Looking GlassFounded in Berkeley, CA in 1982, Through the Looking Glass (TLG) is a nonprofit organization that provides training and services to families with disabled children or parents. TLG emerged from the Independent Living Movement, itself an offshoot of the Disability Rights Movement of the 1970s. TLG’s mission is “to create, demonstrate and encourage non-pathological and empowering resources and model early intervention services for families with disability issues in parent or child which inte-grate expertise derived from personal disability experience and disability culture.”

In the spring of 2012, I had the great pleasure of meeting Judi Rogers, Pregnancy and Birth/Parent-ing Equipment Specialist at TLG. Trained as an occupational therapist, Rogers is also a disabled mom, activist, author, and winner of the 2002 Robert Wood Johnson Community Health Leadership Pro-gram award. Rogers was born with cerebral palsy, which effectively limits physical ability to one side of her body. When she was pregnant with her first child in the mid-1970s, very little information existed regarding disabled women’s experiences with pregnancy and parenting. Without existing sources to turn to, Rogers interviewed other disabled mothers, and began to collect resources and information of her own. In 1991, with Molleen Matsumura, Rogers published Mother-To-Be: A Guide to Pregnancy and Birth for Women with Disabilities.


In 1994, Rogers was diagnosed with breast cancer. Although her mammogram results came back clear, Rogers found a lump in her breast during a self-exam, and ended up having to have a mastec-tomy. What would happen, she thought, if her own disability had prevented her from performing a self-exam? What would happen to women with disabilities that prevent them from standing up and/or standing still for a mammogram? Driven, once again, by her own experience, Rogers became a board member at the Women’s Cancer Center in Berkeley, CA. Her work with the Center focuses on improving breast health access to women with disabilities. One of the greatest barriers to accessible care, says Rogers, is that disabled women are rarely included in medical studies. Healthcare innova-tions based on these studies don’t take disability into account. Early MRI machines, for example, were designed only for people with what she calls “typical bodies.” Newer MRI machines, however, accom-modate “atypical bodies” by allowing patients to lie down. Rogers applauds the Komen Foundation’s “Cancer Knows No Boundaries,” campaign, which raises awareness about lesser known groups af-fected by breast cancer—men, young women, disabled women, etc. Awareness, though, is only the first step. Disabled women are often diagnosed later than able-bodied women, at which point treat-ments are less likely to succeed.

When I bring up my idea to design a mammogram-specific hospital gown, Rogers is instantly in-trigued. Through her work with disabled mothers, Rogers has created a number of ingenious work-arounds to existing products, including a Velcro flap that can be sewn onto onesies for babies. Snap-ping up a onesie, says Rogers, is a two-handed procedure. The Velcro flap allows women such as herself to perform the same action with the use of only one hand. My mammography gown, she says, should have Velcro, not snap closures. Although it seems like a small revelation, the Velcro ver-sus. snap decision affects not only disabled women like Judi, but also older women with arthritis and women who’ve had lymph nodes removed, leaving them with a limited range of arm motion (J. Rog-ers, personal communication, March 19, 2012). As Pullin says, “issues around disability catalyze new design thinking and influence a broader design culture in return” (Pullin, 2009).

In addition to the Velcro onesie, Rogers shows me a crib that slides open from side to side, a towel/ poncho that slides over a baby’s head, a baby bouncy seat attached to an adult walker, a baby seat for a wheelchair, and many other clever adaptations of existing products. The crib and towel, I point out, exemplify the power of universal design to improve product functionality for all users—why should able-bodied parents reach over the side of a crib to pick up their children, straining their backs in the process? Why wouldn’t every parent want a towel that slips over their child’s head at bath time? When she was younger, said Judi, she overused the good side of her body, and now, ironically, that’s the side that’s starting to go. Design for disability also forces us to think preventively (J. Rogers, personal com-munication, March 19, 2012). The kitchen accessory company OXO Good Grips, for example, was designed for home cooks with arthritis, but marketed as a mainstream product. Healthy cooks who use OXO products, such as the carrot peeler with a bicycle-like handle, unwittingly protect themselves from potential injuries associated with repetitive motion.

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Although companies like OXO have successfully brought design for disability to mainstream consum-ers, and organizations like TLG have done a great deal for disabled parents, design for disability still has a long way to go. Laws such as the ADA require only the bare minimum from designers (Pullin, 2009). Although she has trouble walking more than a block or so at a time, Rogers’ doesn’t qualify as a wheelchair user under current laws. She can afford her own chair, but not everyone is so lucky. Cur-rent laws, says Judi, effectively place disabled people on house arrest. You can live, yes, but your ability to function in the world is considered a luxury. Without her wheelchair, Rogers has difficulty perform-ing simple tasks like grocery shopping. Rogers, who recently returned from a month long trip to Viet-nam with her daughter, believes, like Pullin, that independence and pleasure are basic human rights: “In the context of an environment or society that takes little or no account of impairment, people’s activities can be limited and their social participation restricted. People are therefore disabled by the society they live in, not directly by their impairment” (Pullin, 2009).

On my second visit, I meet Judi at the TLG office, now housed in the Ed Roberts Campus in Berke-ley, CA. The campus, opened to the public in 2011, is a universally designed, transit oriented building owned and founded by seven nonprofit disability organizations. The campus, named for one of the pioneers of the Independent Living and Disability Rights Movement, was built in collaboration with the city of Berkeley, Bay Area Rapid Transit (BART), and the San Francisco firm Leddy Maytum Stacy Architects. Located over the Ashby BART station in South Berkeley, the building is directly connected to the station by accessible elevators. In addition to the nonprofit organizations’ offices, the building houses meeting rooms, a computer resource center, a fitness center, a cafe, and a child development center. Beyond mere functionality, the building is strikingly beautiful—a wide, bright red ramp winds up through the light-filled atrium, and a fountain gurgles in the background, creating an audible land-mark for the blind. Although not certified, the building meets LEED gold requirements—natural light and ventilation create an open, airy, and energy efficient environment (Ed Roberts Campus, n.d.).

A week later, I return to the Ed Roberts Campus with my Universal Design class. We tour the facili-ties with Dmitri Belser, Executive Director of one of the campus’ founding nonprofit organizations, Center for Accessible Technology (CIT). The building, says Belser, is an ever-evolving experiment in universal design. Although faced with the challenge of meeting “dueling disabilities,” the building suc-cessfully caters to both wheelchair users and to the blind. Curb cuts at the entrance, for example, are coupled with textural variation in the pavement, thus allowing wheelchair users access while also ori-enting the blind. Besides beauty and functionality, says Belser, the building is a statement in itself. Most buildings designed for the disabled community, he says, “look like junior high schools…dark, private, and shameful.” The Ed Roberts Campus, on the other hand, creates positive visibility for the disabled community. Says Belser, “the architecture supports and enhances who we are. It challenges us to do more and be more” (D. Belser, personal communication, April 3, 2012).


My professor (and head of the department), Ricardo Gomes, suggests future collaborations between the Ed Roberts Campus and the Department of Design and Industry (DAI) at San Francisco State University (SFSU). He hopes to attract more disabled students to the department (R. Gomes, personal communication, April 2, 2012)—if Judi Rogers and Dmitri Belser could go back in time and attend the program, what would their student projects look like? Although their school days may be behind them, Rogers’ and Belser’s pioneering work will no doubt pave the way for a new, innovative genera-tion of designers with, and/or for, disabilities.

DESIGN RESPONSE

Inspired by mobile mammography, outreach campaigns targeted toward under served communities, universal design principles, and, once again, the women from my ‘unfocus’ group, I propose the fol-lowing design guidelines:

• Drop in hours, flexible scheduling, night and weekend appointments.• Childcare, accessible child play areas.• Flexible pricing—sliding scale.• Accessible transportation.• Targeted incentives for the black community—free first mammo-

gram, etc.• Accessible environments—entrance, waiting room, changing room,

exam room, etc.• Imaging technology to accommodate a wider range of physical

ability—for example, allowing women to be screened while sitting or lying down.

• Velcro, not snaps!

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77

GARMENT


Of course, scientific research takes precedence over fashion, but can

something as seemingly insignificant as a well-designed hospital gown

encourage more women to get regular mammograms?

79Garment

DEFINITION

“A hospital gown is a short-sleeved, thigh-length garment worn by patients in hospitals or other medical facilities. The hospital gown is made of fabric that can withstand repeated laundering in hot water (usually cotton), and is fastened at the back with twill tape ties” (Apparel search, n.d.).

HISTORY OF THE HOSPITAL GOWN

The notion of a hospital specific garment is relatively new. For centuries, patients were examined fully clothed. It was not until the mid 18th century that examples of hospital specific attire began to appear in popular art. Johannes Beerblock’s 1778 painting of a sick ward at St. John’s Hospital in Bruges, Belgium, for example, shows patients in turbans and long sleeved white gowns with red V-necks. Wounded British soldiers in WWI, on the other hand, wore bright blue, pocket-less, pajama-like outfits.

In the early 1900s, medical manuals began recommending standardized garments for hospital patients. Eugene Lyman Fisk’s 1928 manual on the periodic examination—a new medical practice at the time—suggests clothing patients in a “specifically designed poncho” made of heavy muslin or sheeting material. The poncho, as described by Fisk, “slips over the head and covers the shoulders and body to the knees.” Fisk recommends closing the poncho with small tape ties halfway between the neckline and the hem. Fisk’s poncho was intended for female patients only. Women, he surmised, would be more comfortable in a covering that “gives a sense of protection and lessens embarrassment.” Men, according to Fisk, should be examined in the nude.

Although Fisk’s gown was later given to male patients as well, his initial design concept remains relatively unchanged. Often referred to as a ‘Johnny,’ the paper thin, back opening hospital gown has become as ubiquitous as it is dreaded, by male and female patients alike (Menting, 2007).

WHY REDESIGN THE HOSPITAL GOWN?

In the greater quest to find a cure for breast cancer, redesigning the hospital gown seems like a trivial pursuit. Of course, scientific research takes precedence over fashion, but can something as seemingly insignificant as a well-designed hospital gown encourage more women to get regular mammograms? Although imaging technology continues to improve, what use is cutting edge technology if women are too afraid or embarrassed to get screened in the first place? Imaging technology must be seen in context, as a crucial yet integral piece of the mammogram experience as a whole. A comfortable, warm, good-looking gown is a gesture in the right direction—it shows the healthcare industry’s respect not only for women’s bodies, but also for their sense of modesty and dignity. If something as simple as a redesigned gown gets women in the door and increases their likelihood of coming back for regular screenings, then half the battle is already won—as Woody Allen says, “Eighty percent of success is showing up” (IMDb, n.d.).


CASE STUDIES

Fashion

Fashion Rx: Nicole Miller for Hackensack University Medical CenterHackensack, NJ, 2001

Although variations on the ‘Johnny’ gown are still a mainstay in hospitals, the fashion and healthcare industries have collaborated on several projects to rethink and redesign the hospital gown. One of the first collaborations took place in the late 1990s, when New Jersey’s Hackensack University Medical Center commissioned the designer Nicole Miller to redesign their patient wear. Miller’s ‘Fashion Rx’ line includes drawstring pants, pullover tops, and side and front snapping gowns. The line, like Miller’s nonmedical apparel, comes in colorful, “whimsical prints” (Menting, 2007). Before Miller, says Nancy Corcoran, administrative director of guest services, “they kept coming up with variations of the same theme: ties, dreary prints, nothing innovative.” Although Miller’s gowns are twice as expensive to produce, they are made of more durable fabric, and are expected to last twice as long. Corcoran describes the new gowns as part of the medical center’s mission to “exceed all patient expectations.” The center also features doormen, a marble lobby, a registration desk, and a cappuccino bar (Becker, 2000).

Vivienne Westwood, Stella McCartney, and others for the Teenage Cancer TrustLondon, UK, 2009

As part of a fund raising campaign for the Teenage Cancer Trust, eight British designers were challenged to redesign the hospital gown with teenage patients in mind. The design challenge was spearheaded by Susannah Temko, and 18 year old ovarian cancer patient. The gowns, designed by Vivienne Westwood, Stella McCartney, Gareth Pugh, Giles Deacon, and Christopher Kane, among others, were featured in the September 2009 issue of Vogue. “The original gown was the most depressing garment I have ever seen,” said Kane, who designed a pink mini-dress embellished with crystals. “I wanted to replenish everything and make it bright and lovely—to make you laugh. Now it’s a colour that makes your heart leap.” The gowns were auctioned off at a benefit concert in London to help raise funds for a new teenage cancer unit at the Royal Marsden Hospital in Surrey. The new unit, like ten others of its kind across the UK, will include private rooms with built in bathrooms, plasma TVs, and sound systems. The unit will also include communal space, patient kitchens, and unlimited visiting hours (Scotsman News, 2009).

81Garment

Diane von Furstenberg and Jeanne Ryan for Cleveland ClinicCleveland, OH, 2010

In 2005, Cleveland Clinic nurse Jeanne Ryan began working on a project to improve the hospital gown. With input from fellow nurses and doctors, Ryan identified a series of essential features for her new and improved gown—the gown should allow for easy access to the body during examinations and treatments, be long enough to maintain modesty, have pockets for monitors, and have loose sleeves for IVs. Above all, Ryan wanted her gown to be durable and comfortable.

Five years after Ryan began work on the gown, a serendipitous meeting between Cleveland Clinic Chief Executive Delos Cosgrove and designer Diane von Furstenberg launched the veteran nurse into red carpet territory. Von Furstenberg, best known for her “chic and practical wrap dress,” seemed a natural partner for the collaboration. With Ryan, Von Furstenberg created a unisex, cotton twill robe-like gown. The gown gathers gently at the waist, ties on the side, features a modern, blue and green print inspired by the clinic’s logo, and comes in four sizes. Although the gown may not be as important to patients as treatments, Ryan believes that “anything we can do to improve their experience will help. If you feel better, that has to affect your overall outlook” (Stein, 2010).

Universal Patient GownBen de Lisi for The British Design Council and Department of HealthLondon, England 2010

Across the pond, the British government, in association with the national Design Council, held a design contest in 2010 to revamp their highly criticized National Healthcare System (NHS). The contest, part of the Design for Patient Dignity program, brought together seven design teams in an effort to improve patient privacy and dignity. Designers were awarded 25,000 pounds ($37,500) each for their prototypes (Lever, 2010). Winning prototypes include BedPod, a private, patient-controlled bed environment, Capsule Washroom, a single sex bathroom, Reclining Day Chair, a wheelchair/bed hybrid, Novel Screening Systems, which separates male and female areas, and Flexible Signage System, which allows staff to designate same-sex areas. The project was inspired by the success of a similar initiative, ‘Design Bugs Out,’ which challenged designers to improve hygiene and reduce the risk of patient exposure to infections such as MRSA (M2 Presswire, 2010).

Ben De Lisi, a New York-born fashion designer working in London, won for his prototype of a new, universal gown design (Linden, 2010). Although better know for as a designer for the likes of Kate Winslet (Lawless, Associated Press, 2010), De Lisi hopes to bring a touch of red carpet glamour to the hospital environment: “Whether it is an actress on the red carpet that gown has to work for the occasion. It has to have the same philosophy, it has to be hard-


working, effortless and timeless” (Lever, 2010). The NHS acknowledges that the old gowns “are an unnecessary humiliation” (Rose, 2010). For de Lisi ‘unnecessary humiliation’ is an understatement: “You can’t possibly be confident when you’re a*** is hanging out of your clothes for everyone to see. I wouldn’t want my mother to be seen in one; why should I expect anyone else’s mother to have to wear one?” (Harris, 2010). The new gowns, says de Lisi, will allow patients to “walk through the ward with comfort, dignity, and modesty” (Rose, 2010).

Throughout the design process, de Lisi consulted with several patients and caregivers: “I had wrapping ideas, gowns with ties, tent gowns with Velcro tabs, kimono-type gowns with snap details, jersey gowns, and enveloping gowns you pull over your head and pull the wrap back over the front. I took sketches to some of the staff nurses and they immediately picked two gowns that they liked.” Based on the feedback he received, de Lisi made various modifications to his initial design concepts—snaps went from metal to plastic so as not to interfere with MRI scanners, shoulders were opened to create accessible entry points for IVs, etc. “This project isn’t about glamour,” says de Lisi, “it’s about well-being. This gown has to be hardworking and user-friendly and help clinicians do their job” (Design Council, n.d.).

De Lisi designed his gown based on the NHS’ call to “design a range of functional patient clothes (which could include daywear, nightwear and footwear) that significantly reduce the risk of physical exposure, cater for differences in patient size, cultural and religious preferences and are appropriate for a range of activities including sleeping, resting, journeys to and from the toilet/bathroom, and leaving the ward” (M2 Presswire, 2010). De Lisi's gown, made of high quality poly-cotton and printed with a classic pajama stripe, is part of a ‘mini-health collection’ (Rose, 2010) that includes a series of accessories—a light weight shoulder bag, pajama bottoms, slippers, a cozy fleece blanket, etc. (Gallagher, 2010). “I wanted the new gowns to feel fabulous and aspirational. They are made from cotton shirting which is very smooth, cool and lux” (Roberts, 2010). The gowns are unisex, or, as de Lisi puts it, “look just as good on a big beefy black man as they do on a slim white blonde” (Harris, 2010). The gown is reversible, and features a V-neck on one side and a scoop neck on the other—patients can choose which neckline to wear in the front (Ben de Lisi, n.d.).

“Fine feathers make fine birds,” says de Lisi, “If you look good, you’ll feel good. The old hospital gown was hideous, embarrassing, ill-fitting and probably ill-making too. When you are ill, the last thing you need is to be embarrassed as well.” Health Minister Ann Keen, a former nurse, agrees. Keen says the gown will improve the hospital experience in the UK, and hopes it will be a model to president Barack Obama in his efforts to overhaul the American healthcare system (Lawless, 2010) (Roberts, 2010). “Being involved with the Design for Dignity initiative,” says de Lisi, “has been a wonderful but humbling experience. The chance to make a difference in so many lives when they are feeling so vulnerable is a dream that I would think every designer would hope for” (Ben de Lisi, n.d.).

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Academia

Down with the GownProfessor Traci LamarNorth Carolina State University (NCSU) College of Textiles for the Robert Wood Johnson FoundationRaleigh, NC, 2006-2009

Famous fashion designers aren’t the only ones grappling with new designs for the hospital gown. Hidden away within the halls of academia, NCSU Professor Traci Lamar and her College of Textile students have taken on a similar, but more heavily research based design project. “It is as if the patient is an object,” says Lamar. “Can’t we develop a more respectful garment?” (Specialty Fabrics Review, 2009). In 2006, as part of their Down with the Gown initiative, the Robert Wood Johnson Foundation’s awarded Lamar and her students $250,000 to work on the project over a two and a half year period.

During the research phase of the project, known as Innovative Design of Garments for Healthcare Patients, Lamar and her students surveyed a wide range of interested parties: “Essentially there’s the patient and the care provider who has to administer medical procedures, but you’ve also got a whole supply chain that doesn’t use the product but has a stake in producing it, maintaining it, and paying for it” (Sokol, n.d.). Lamar and her team lead surveys, focus groups and interviews to identify key aspects of their proposed redesign— style, cost, durability, comfort, function, etc. (Ruffin, 2009). Predictably, Lamar found that patients, healthcare providers, and supply chain participants prioritize different aspect of the design—patients are concerned with dignity and modesty, whereas caregivers focus on accessibility to the patient during medical procedures. Supply chain participants, on the other hand, are most concerned with life-cycle cost and durability. Priorities differ, but are not diametrically opposed, says Lamar—although patients may not care about durability, they are also not opposed to wearing a garment that can be washed repeatedly (Robert Wood Johnson Foundation, 2009).

All interested parties can agree with Lamar, however, that the hospital gown as we know it as an “anonymous garment,” that’s “one size fits none.” In Lamar’s observations, some patients wear two gowns at once, front and back, to protect their modesty. This doubling up not only double’s hospitals’ inventory, but restricts caregivers’ access to IVs, etc. (Sokol, n.d.). Lamar also notes that the ties on traditional gowns are prone to knotting, and that knotted gowns are often discarded (Ruffin, 2009). Nurses confirmed Lamar’s proposed design features, including warmer, long-sleeved gowns, and pockets for monitors and other medical devices (Sokol, n.d.): “the gowns are so thin they are really just a rumor between you and the staff,” said one patient. Lamar and her students are also researching anti-microbial fabrics to reduce the risk of hospital borne infection. Although cost is an issue, Lamar and her team have


received positive feedback from hospital administrators: “I think people tolerate a lot that they wouldn’t tolerate in the real world because they are sick and vulnerable,” says Meera Kelley, vice-president for quality and safety at North Carolina’s WakeMed Health, “I think we need to do better” (Ruffin, 2009).

Progressive Recovery CollectionLive Well Collaborative—University of Cincinnati (UC) and Hill-Rom Company, Inc.Cincinnati, OH, 2009

Students at UC, like their counterparts at NCSU, took on a similar, if more commercial, gown redesign project. As part of an ongoing business-university model called the Live Well Collaborative, UC students partnered with the Hill-Rom Company, an Indiana based maker of hospital beds and medical equipment. The partnership, or ‘innovation incubator,’ brought together design, business, nursing, and biomedical engineering students and faculty. Students met with nurses and patients to identify key design problems. Dale Murray, associate professor of industrial design, spoke to students after a three-month hospital stay: “The issues with hospital gowns are innumerable. Fit is a big issue. They wrap uncomfortably around the bedridden patient, even wrapping around the neck. The ties become knotted or easily untied. A patient is alternately too hot or too cold. From the patient’s point of view, the common hospital gown today does not work.” Other findings mirrored those of NCSU students—the need for accessible closures that can accommodate medical devices, the need for durable garments that can withstand frequent washing, the need for pockets, coverage, warmth, and varying body temperature, etc.

Rather than attempting to address the needs of all patients with one gown, UC students created multiple gowns for varying degrees of illness—one for seriously ill, bedridden patients, one for somewhat mobile patients, and another for the fully ambulatory. To cut down on waste and inefficiency, each gown can be cut from the same pattern. Brooke Brandewie, a student involved in the project, describes the progression from one gown to anther as a series of rewards: “As the patient improves in condition, they will ‘graduate’ to the next gown appropriate for their condition and mobility. It not only represents the patient’s progressive physical improvement, it provides a psychological boost as well.”

The gown for seriously ill, bedridden patients is open-backed, to reduce the risk of pressure ulcers. The gown also has shoulder slits to easily accommodate IVs, and is made of antimicrobial materials such as bamboo and crabyon (made from crab shells). The gown for moderately ill patients more closely resembles a bathrobe. It features a belt closure, a full back, and a large front pocket. The gown is made from material that wicks away sweat and moisture, and comes equipped with accessories to accommodate varying temperatures—a scarf, arm warmers and leg warmers all made from soft, anti-bacterial bamboo jersey. Says Brandewie,

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We created accessories to serve both caregivers and care recipients. The pockets in items are necessary because patients really don’t have a space that’s always within reach for the small items they use and want, like a phone, chapstick and iPod. In hospitals, we found that nurses and patient were improvising with mini purses tied to the side of the bed for extra storage and were cutting up old socks for arm warmers. And a patient with a shawl doesn’t have to call for a blanket and wait for it to be delivered.

For fully mobile patients, the students designed crop pants and a gown top. The pants are cropped to avoid tripping, and have a stretch-jersey waist to accommodate various sizes. The pants also snap open and closed along the outside seam to allow for braces or swelling.

As a corporate-academic collaboration, the Progressive Recovery Collection is backed by a strong business case. UC students found that current gowns cost approximately $3, and can last through 40 uses. Although gowns from the Recovery Collection are more expensive, they are also more durable. Students also found that certain target markets are willing to pay extra for more comfortable, dignified hospital wear. Gowns and accessories could be available online and at hospital gift stores, and patients could keep gowns to wear for physical therapy or future hospital stays (Hanlon, 2009).

Project Better GownUniversity of Minnesota (U of M) College of Design for the Park Nicollet FoundationTwin Cities, MN, 2011

As part of the Park Nicollet Foundation’s (the fundraising arm of the Minnesota based Park Nicollet Health Network) 2011 “Project Better Gown,” initiative, 37 students from five American college design programs competed to redesign the hospital gown. “We believe by creating a better hospital gown we will create a better experience for our patients,” says Christa Getchell, president of the foundation. U of M College of Design apparel students Linsey Gordon and Silvia Guttmann created the award-winning design, and took home a $25,000 fellowship grant to continue their design development. Gordon and Guttmann’s design criteria echoes those of NCSU and UC students: “We tried our best to create a gown that modestly covers the patient, is easy to use for hospital staff and patients, fits within the current laundering and manufacturing methods, and improves aesthetic response.” Gordon and Guttmann’s gown is dark teal with neon green stripes, has a full-coverage back, a kangaroo pouch in the front and ties on the sides (Miller, 2011).


DUO GownUniversity of Montreal School of Industrial Design for Univalor Montreal, Canada, 2010

Up north, researchers at the University of Montreal also created an innovative hospital gown. Alumna Noémie Marquis and professor of Industrial Design Denyse Roy created the DUO gown, which foregoes ties, snaps and Velcro altogether. The unisex, one size fits all gown has an overlapping design, and is made of superimposed front and back poly-cotton panels. By eliminating closures, Marquis and Roy not only avoid the problem of knotting, but also lower the cost of manufacture and production. The simplified design also allows laundry services to make one fold instead of two. The gown can be manufactured using three basic prints, which can be inverted to create 81 different looks. The gown was tested at St. Mary’s Hospital in Montreal, and received enthusiastic feedback from patients and caregivers alike. The gown will be manufactured and distributed by veteran Canadian hospital supplier W. Laframboise Inc. Univalor, a company that brings University of Montreal innovations to the marketplace, helped to commercialize the DUO gown. The gown was finalized in 2010, and is forecasted to reach the North American market in five to ten years (Desjardins, 2010).

Inclusive GownHelen Hamlin Centre, Royal College of Art for the British Design CouncilLondon, UK, 2010

In 2010, researchers at the Royal College of Art’s Helen Hamlin Centre designed the Inclusive hospital gown. The research team examined the life cycle of a hospital gown, from manufacture, to purchase, to storage, wear, laundry, and disposal. The team addressed the needs of patients, clinicians, and laundry services. While looking at the lifetime cost of a hospital gown, the team found that the average gown goes through about 40 cycles of wash and wear. The team also identified a number of hidden costs—some patients take gowns home with them, other gowns are thrown away because of knotted ties, etc. The Inclusive Gown has several features that respond to these observations—the gown is one size fits all, has a belt tie around the waist, and can be opened from the front or back. The waist tie is replaceable, so that knotted gowns don’t have to be disposed of. Butterfly sleeves are made of overlapping fabric with a slit down each arm, allowing clinicians access to IVs, etc. The design features an inside pocket for personal effects, and an outside pocket for catheter bags and other medical paraphernalia (Design Council, n.d.).

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Corporate

HealthymaginationGE For Women by Women New York, NY, 2011

In addition to fashion and academia, corporate healthcare equipment manufacturers such as GE have taken an interest in redesigning the mammogram experience. As part of a billion dollar global campaign to fight cancer, GE’s Healthymagination wing held a four-week intensive brainstorming session to spark new ways of thinking about mammography and breast cancer treatment. Lisa Kennedy, director of strategic marketing at Healthymagination, said: “Our goal is to reframe the experience and empower women. Everything we have known about cancer over the last century will be eclipsed over the next five years. We know we’re at a tipping point. We want to accelerate innovation.” The brainstorming session, which took place throughout the month of October (Breast Cancer Awareness Month) in 2011, culminated in a design installation in New York’s SOHO district. Designers, patients, and students—all women—were invited to participate. Among the key participants were IDEO, Behance, Steelcase, Smart Design, the Mayo Clinic, and the Susan G. Komen foundation. Erica Eden, an industrial designer at Smart Design, described the project in broad terms: “We’re looking at the overall experience. The design challenge is: what’s the sweet spot in between a spa-like experience and a medical procedure.” Participants identified common reasons women avoid mammograms—fear of pain, busy schedules, dread of cold, sterile exam rooms, etc. Proposed solutions included fuzzy pink robes instead of hospital gowns, soft lighting, results while you wait that can be taken home on a thumb drive, and greater availability of appointments (Jackson, 2011).

Medical/ Institutional

Faith Gowns, Maine Medical CenterPortland, Maine, 2004

At Maine Medical Center in Portland, Maine, hospital officials found that three out of ten women were skipping their hospital appointments. Muslim women from Africa, especially those from Somalia, were missing appointments at a particularly alarming rate (Deseret News, 2004). Over the last ten years, Portland has become a major resettlement location for Somali, Sudanese, Iraqi, and Bosnian Muslim refugees (Zezima, 2004). When contacted at home, Muslim women described a paralyzing fear of exposure (Deseret News, 2004). Medical interpreters said that mammograms were particularly upsetting to Muslim women. After being shuffled between changing rooms, waiting areas, and exam rooms, Muslim women were too mortified to ask questions or absorb their doctor’s advice (Zezima, 2004). Traditional


‘Johnny’ gowns, which fall just below the knee, went against Muslim women’s religious and cultural belief in modesty of dress. In response to these concerns, the medical center began offering Muslim patients a two piece alternative to the traditional gown, which covers the body from head to toe. The bottom piece is modeled after a sarong, and comes in colors suited to both male and female patients. “It’s one piece of an overall effort to improve patient care,” Said Dana Farris Gaya, manager of interpreter and cross-cultural services. “We saw that people were not getting the care they needed. We had to look at the barriers to care, and the Johnny was one, so we made it longer.” Although the hospital received multiple emails complaining about favoritism toward Muslim patients, Gaya believes that the new gowns are an improvement for everyone: “This is a great example of a challenge raised by a specific community that can ultimately benefit all patients,” she said (Deseret News, 2004).

BEYOND HEALTHCARE ATTIRE

As the previous examples show, a great deal of thought has already been put into redesigning the hospital gown. That said, it’s equally informative to look beyond hospital wear for inspiration. Several examples of comfortable, wearable styles exist in fashion, and could be easily adapted for hospital use. The aforementioned fashion designers have successfully modified their own iconic styles to suit the medical environment—Miller with her playful prints, von Furstenberg with her wrap dress, and de Lisi with his elegant take on lounge wear and pajamas. In spa wear, variations on the Japanese kimono welcome guests with a nod to eastern medicine’s holistic approach to health and wellbeing. At the hairdresser, women and men alike are given a simple, one snap black polyester gown with a tie belt. In sportswear, functional fabrics are styled to keep athletes comfortable and confident. Nursing mothers also have a range of choices for attractive yet functional bras and tops to protect their modesty without sacrificing their sense of style.

DESIGN RESPONSE

Fit/Look: Kimono/RobeOf the various styles I considered, I chose to go with a kimono-like look for the gown. Functionally, the kimono lends itself naturally to the gown. Its simple, elegant design incorporates many elements I was looking for—wide, three-quarter length sleeves (for comfort and warmth), an open front with a simple tie belt (for ease of examination), etc. Shorter kimonos that fall at the hip are the perfect length—why, if you don’t have to take off your pants or skirt for a mammogram, do they give you an ankle length gown? A shorter length feels less clinical—more like a shawl or a wrap than a hospital gown. Although I initially thought of adding a kangaroo-style pocket to the front of the gown for personal effects—cell phone, earrings, keys, etc.—I found that most mammography centers provide patients with lockers. Cell phones, etc., are not allowed in the examination room anyway, because they can interfere with the imaging technology. I initially chose to include traditional side pockets instead, so that a chilly and/or nervous patient would have somewhere to put her hands while waiting to be called in.

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MATERIALS RESEARCH

TextilesWhile researching fabrics for the project, I looked for materials that would look good while also providing comfort, warmth, functionality, and durability. Although the latest hospital gowns for general use must be made with anti-microbial material, textiles for the nonsurgical, mammogram environment need not be limited to those that prevent the spread of infection. Like hospital gowns for general use, however, the material for the mammogram gown must be durable enough to withstand multiple, high temperature washings.

I fi rst considered 100% cotton, but found that it was too delicate to withstand multiple washings. It also wrinkles easily—no one in their right mind is going to take the time to iron a hospital gown, and the wrinkled cotton gowns end up looking sloppy when stacked on top of each other. 100% cotton, while soft, isn’t as cozy as, say, terry cloth or fl eece. But terry cloth feels too much like a bathrobe, and fl eece can be too warm, especially for women in the throws of menopausal hot fl ashes. So, back to cotton. Thin cotton doesn’t provide a great deal of warmth, however, while thick cotton feels heavy and uncomfortable. So instead of 100% cotton, I chose to go with a poly-cotton blend. Polyester gives the blend weight and durability, which prevents disintegration in the wash and wrinkling, while cotton maintains breathability, lightness, and softness.

I also considered cotton-lycra blends, but found that their stretchiness looked sloppy, and didn’t stack well. In addition, I chose to line the poly-cotton gown with cotton-fl annel, a super-soft, warm and cozy material most often used for baby sheets and clothes. Cotton-fl annel, while soft, is a non-stretch material, and would therefore not work as lining for a stretchy, cotton-lycra shell. Poly-cotton and cotton-fl annel, however, can be easily sewn together to create a sleek, soft shell with a warm, cozy lining.


I then considered eco-friendly materials—organic cotton, bamboo, recycled materials, etc., but found that they were not only cost prohibitive, but also very limited in their range of prints. In later iterations, I would hope to incorporate more eco-friendly materials. Hopefully patients and caregivers will respond well to the gowns, and the next generation of gowns could introduce eco-friendly materials at a slightly higher price. In the future, also, I could look into creating my own patterns and having them printed onto eco-friendly material. While not overtly eco-friendly, poly-cotton and cotton-flannel are both relatively durable materials—if they hold up through more wears and washes without having to be disposed of, then they are green in their own way. Because the shell is made of long-lasting poly-cotton, overly worn lining can be easily replaced, increasing the life cycle of the gown. Although lining creates a two-step process and necessitates more material, a lined gown prevents patients from having to wear two flimsy gowns, and is therefore worth the extra cost and effort.

Color

Thinking Pink

When considering color, I sought to create a gown that referenced the iconic pink ribbon campaign without going totally pink. Because of its cutesy, juvenile associations, I thought of foregoing pink completely. But I wanted the gown to act not only as a garment, but also as a message. Whether or not it’s your color, pink speaks the language of the movement. If the goal is to spread awareness quickly and effectively, then why rewrite a visual language that we’ve all come to associate with the cause? So instead of creating a pink gown, I initially decided to create a solid, neutral gown with a pink-patterned lining. In the world of retail, says a friend who works at Gucci, “it’s all about hidden luxuries” (A. Marshall, personal communication, February 16, 2009). The pink lining then acts not only as messaging device, but also as a subtle moment of delight and surprise in an otherwise unpleasant mammogram experience. In a city like San Francisco, you see many more women in black than you do in pink. Why, then, are sophisticated, urban women subjected to childlike floral prints? A sleek, solid shell in a neutral tone humanizes the hospital gown by bringing it closer to our regular clothing and making us feel more like adults.

Rethinking Pink (and polyester)

After reading social critiques about the ‘pinkification’ of breast cancer, I did indeed decide to forego pink altogether. Inspired by Ehrenreich’s call to change the complexion of breast cancer from pink to green, I chose a sophisticated white, grey, and green print. If pink says babies and Barbies, then green says calming natural landscape and a relaxing day at the spa. The print is elegant, modern, and not at all childlike or cutesy—no flowers, hearts, or teddy bears, just bold, curvaceous, vertical stripes of color. Because of the sober nature of the exam, I tried to choose a print that was uplifting without being too forcibly “fun.” Inevitably, women will wonder why the gown isn’t pink. The counter intuitive color scheme, I hope, will prompt discussion, leading women away from corporate campaigns and toward organizations

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like Breast Cancer Action. In addition to green, I have samples of the same pattern in yellow, and, yes, if a hospital demands it, pink. Why not create multiple gowns in a variety of colors to break up the monotony of the hospital environment?

Although I initially envisioned a patterned lining and a solid shell, I found that combination to be a bit drab. The cotton shell is now patterned, to create an immediately inviting garment, and the cotton flannel lining is a solid cream—both cozy and calming. Also inspired by Ehrenreich, I opted for 100% cotton instead of poly-cotton—yes, it may be a bit more expensive, and wrinkle easier, but how could I rest easy with a synthetic material like polyester after reading about environmental causes of breast cancer?

ClosuresWhen deciding what types of closures to use, I kept functionality and accessibility in mind. Rather than using traditional tab ties, which are awkward and can get easily knotted, I chose to use a simple belt tie. The belt tie allows for flexibility in fit—each woman can tie it as tightly or loosely as she likes, depending on her body shape and personal preference. The belt is slightly widened, to further prevent knotting. I also chose to keep the belt attached to the gown, to prevent losses during washing.I first considered metal snap closures, but found that metal would interfere with imaging technology during the exam. I then moved onto plastic snaps, but found that they were difficult to open and close, especially for women with limited ranges of motion. Dexterity, while always an important factor, is often an issue for breast cancer patients, who may have had lymph nodes removed in surgery. Because the exam is given mainly to women between the ages of 50 and 70, dexterity issues associated with aging such as arthritis must be accounted for. Velcro, although hardly associated with haute couture, seemed the right closure for the job. It requires only one hand to open and close, is relatively durable through repeated washings, and can be easily replaced after too much wear and tear. Because Velcro is often associated with children’s clothing, I chose to hide it under discreet panels. In future iterations, I would also include a Velcro option for the tie belt, to accommodate women with dexterity issues.

PROTOTYPING

Mini: Muslin and cotton-flannelDuring site visits to local breast health centers, I collected a number of gowns currently in use. I also ordered a few mammogram specific gowns from hospital wear companies I found online—one a pink and white cotton kimono style, another a flowery mammogram “cape.” I then took the existing gowns and my sketches for new gown design ideas to my friend Jenna, who I’ve known since I was four and who can do just about anything. Together, Jenna and I cut a simple pattern out of paper, used the paper pattern to cut fabric, and sewed together a tiny mock-up of my design concept. In place of poly-cotton, we used muslin for the shell—although slightly stiffer, muslin gets the idea across in a cost effective, rough way. We used real cotton flannel for the lining, because we wanted to showcase its softness and warmth.


I took the mini-prototype on a return site visit to UCSF for my mother’s mammogram. The mini-gown quickly became a topic of conversation in the waiting room. My mother’s technologist, Catalina, was initially hesitant to let me into the examination, due to time constraints and lack of space. When I showed her the mini-prototype, however, she lit up and agreed to let me in. As it turns out, both of her parents were tailors, and she loves to sew herself. She liked the basic design, and agreed with my decisions to keep the belt attached and use Velcro for closures. She also agreed that a front pocket was unnecessary, and encouraged me to forego pockets altogether—pockets, she said, would just complicate production. She did not, however, like the purple cotton-flannel print I’d chosen for the lining. She insisted that it should be pink, to signify mammography and breast cancer. She was not, however, opposed to a neutral shell with pink lining. My experience with the mini prototype confirms the theory that people respond more to concrete objects than they do to theoretical ideas. When I emailed UCSF about the gown redesign, I was easily dismissed. When I showed up with a tiny version of the gown, however, all of the women who saw it wanted to play with it and give me their two cents about the design.

Full Scale: MuslinJenna went back east for the semester to work on her dissertation in medieval history (like I said, she can do anything), and I found myself without a seamstress. As luck would have it, however, my little brother’s friend and roommate, Meredith, teaches sewing to children in the East Bay. I contacted her about the project, offered her a minimal, student-budget fee, and she agreed to help me. We met in a café in Oakland, and quickly found our connection serendipitous. As it turns out, she has a BA in textiles from the California College of the Arts (CCA), and first learned how to sew from her father, a nurse who hated snoopy prints and decided to make his own scrubs. I showed Meredith the existing gowns I’d collected, the mini-prototype, and various fabric samples I was considering. We agreed to meet in two to three weeks, after she’d had time to mock up a full-scale muslin version of the design.

The full-scale mock-up came out just as I had intended, but, as I discovered, good intentions don’t always lead to good results. In our pre-production meeting, Meredith and I decided to create Velcro openings on the sides of the gown. If the top seam of each sleeve remained intact, we reasoned,

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the gown would stay in place, and the patient could open and close each side herself. The resulting prototype, however, had such an excess of Velcro that it was awkward to take on and off, and felt very child-like. Although we intended to simplify the gown’s functionality, the end result felt overly complicated and clunky. For the final prototype, we decided to go back to the original, top-seam sleeve openings, and to use Velcro dots instead of strips of Velcro. We also decided to forego pockets altogether— patients aren’t allowed to bring personal effects into the exam room anyway, and lockers are usually provided for purses, jackets, etc. The lining would make the gown cozy enough, making pockets unnecessary. Yes, pockets would be nice, but our mantra for the final prototype was “simplify, simplify, simplify.”

Full Scale: Cotton and cotton-flannelI was pleased with the final prototype. The shift from plain muslin to printed cotton made it feel more much polished, and the lining gave it the extra coziness I had hoped for. I tried it on, and the flaps seemed to work—they revealed one breast at a time, while keeping the rest of the body as covered up as possible. The length was just right—more like a top than a “gown.” The belt was still a bit too thin—as mentioned earlier, techs complained that belts often got knotted—but Meredith said it was an easy fix. In less than an hour, she replaced the half inch belt with a two inch belt.

Although I only had one prototype made, if produced, I would offer the gown in three sizes. I would also offer an alternative, over the head, poncho-style gown, for women like Judi who only have the use of one arm. After all, universal design teaches us that one size does not fit all—mass customization, not universality, creates a variety of options to suit varying needs. As it is, the gown’s flaps must be opened and closed by the technologist performing the exam. I would have liked to come up with a solution that made it possible for women to open and close the flaps themselves, but the full scale muslin prototype, with its excessive Velcro, felt overly complicated—as Judi said, we always start with Rube Goldberg and work toward a simple solution. For the final prototype, I opted for a simpler solution, with just a few Velcro dots along the top seem of each sleeve. Currently, technologists help women pull one side of the traditional gown off at a time—with the addition of Velcro dots, that process should be less awkward and more efficient. During my mother’s mammogram, Catalina took great care to retie her gown after pulling one side down—a clever workaround to keep her as covered up as possible. The redesigned gown, with its simple, functional design, will make these workarounds unnecessary.

BRANDING: Mámala

Mámala is a Yiddish term of endearment, usually for a child. It literally means “little mother,” but in context means “mother’s little one” (Yahoo Answers, 2007). I chose to name my gown redesign Mámala in honor of my mother, whose experience with breast cancer inspired the project. Since I can remember, my mother either calls me Mámala or Bubula (baby).

My logo design incorporates the iconic pink ribbon—but changes the color from pink to green—with the letter M, for Mámala.


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USER TESTING/FEEDBACK

Connie Ulasewicz, Ph.D.Associate Professor, Apparel Design and Merchandising, SFSUWhen I emailed Prof. Ulasewicz about my project, she was instantly enthusiastic (personal communication by email, March 9, 2012). When I went to her office to show her my mini prototype, however, her first response was, “so, you’ve created a more expensive gown.” Lose the pockets, she said—they’re an unnecessary expense. Does it have to be lined? Could you make it out of a thicker material, so as not to add the extra cost of lining the gown? Why Velcro dots, she asked, rather than strips of Velcro, which could be sewn on easily, in one step rather than three? Why not use Raglan sleeves—the kind used for a baseball T-shirts—to minimize the number of seems needed? (C. Ulasewicz, personal communication, April 24, 2012).

I defended the tiny prototype as best I could— the cotton-flannel lining had to stay, I said, because it made the gown cozy and warm. I had tried Velcro strips on the full-scale muslin prototype, I told her, but they ended up feeling like overkill. With all that Velcro, the full scale prototype was awkward and child-like, not at all what I was going for. Raglan sleeves, though I’d never heard the term before, seemed like an excellent idea for future iterations of the gown.

My tiny gown and I were a bit hurt—wasn’t our expense worth it? You pay for what you get, right? After all, this was a student project, free of real-world economic constraints. Isn’t it a student’s place to think big, to create an example of what could be, to keep an optimistic, even utopian, perspective? I did have to admit, however, that Connie had a point—with American healthcare already horrendously underfunded, a pricey hospital gown would be a hard sell. Had I fallen in love with my prototype, and lost all grounding and perspective? Irony of all ironies, I didn’t even have healthcare myself, and here I was working away on an impossible, frivolous project.

To allay my rising doubt, I logged onto HCD Connect, IDEO.org’s social networking site for Human Centered Design projects. New, encouraging comments had been added to my project profile. In the company, if virtual, of other “impatient optimists,” I pushed doubt out of my mind, and continued to dream about “designing a better world for everyone” (IDEO.org, n.d.).

HCD Connect, IDEO.orgIDEO’s nonprofit wing, IDEO.org, published the Human Centered Design (HCD) Toolkit in 2009. The Toolkit, free for download, acts as an “innovative guide for social enterprises and NGOs worldwide” (IDEO, 2009). In 2012, IDEO.org launched a social media version of the Toolkit, which allows participants in HCD projects to connect online. Thanks to my professor, Ricardo Gomes, Sean Hewens and Liz Ogbu presented the Toolkit to my Universal Design class, and invited us to participate in the HCD Connect beta site. As a beta tester, I had the opportunity to reframe my project in the context of HCD, and to receive excellent feedback from the HCD community. The following is my “story,” as told on the site, followed by a sampling of comments from other users.

97Garment

HeadlineThe Mammogram Experience: A Redesign.

Summary A holistic redesign of the mammogram experience, focusing on the environment, imaging technology, outreach, and the hospital gown. How did you use the HCD Toolkit and/or human-centered design as part of the project?

Hear• Individual interviews: I interviewed a number breast cancer survivors, including my mother, the

inspiration behind the project. • Group interviews: I held an ‘unfocus’ group of eight women, age 40 to 65. All had an interest

in the project—some had had mammograms, others had not, some were breast cancer survivors, others were not. In-context immersion: I went on site visits to mammography centers at UCSF, CPMC (San Francisco), and Alta Bates (Berkeley). I also observed my mother getting a mammogram at UCSF.

• Expert interviews: I interviewed a breast surgeon, an RN, a radiologist and two mammogram technologists at UCSF, the manager of the breast health center at CPMC, and the architect and hospital administrator responsible for designing the mammography center at Alta Bates. I also interviewed an occupational therapist/ activist for disabled women with an interest in making the mammogram experience more inclusive.

• Seek inspiration in new places: For the environment, I’ve looked to hospitality and spa design for inspiration. For imaging technology, I’ve looked at companies outside the medical field that have successfully humanized technology—Apple, etc. I’ve also looked at baby care products—bottles, etc., that mimic the shape of a woman’s breast. For the hospital gown, I’ve looked at nursing tops, sportswear and fashion.

• Extremes and mainstreams: I met with an occupational therapist who specializes in developing baby care products for disabled mothers. Her work is inspired by her own experience as a mother with cerebral palsy. She is also a breast cancer survivor, and is interested in adapting the mammogram experience to better include disabled women. Based on her feedback, I’m thinking of redesigning my hospital gown in a more poncho-like style, to accommodate women who don’t have the full use of both hands.


99Garment


Create:• Participatory codesign: I’m working closely with a seamstress/textile expert to redesign a

mammogram-specific hospital gown.• Empathic design: I’m inspired by my mother’s experience with breast cancer and my own fear of

hospitals.• Share stories: I’ve given several presentations—to fellow students, to my ‘unfocus group,’ to a

salon of female designers, to my professors, etc.• Make ideas real: I have a tiny prototype of the new gown, which I’ve taken to site visits and

presentations for feedback. My seamstress is working on a full-scale, muslin mock-up of the gown, which I’ll again shop around for feedback. I’ve done extensive materials research in anticipation of the final design.

What was the biggest challenge that the project faced? Did you overcome it?

The biggest challenge has been finding a focus within the project that’s doable. It’s an overwhelming topic, with a lifetime of potential improvement. With the hospital gown, I’ve found my niche.

What was/will be the impact of the project?I hope that something as simple as a better looking, cozier, and more functional mammography gown will encourage more women to get regular screenings. I also hope that my research into the experience as a whole—environment, imaging technology, etc.—will inspire hospital administrators, architects, interior designers,engineers, and many more to get involved in improving the mammogram experience for all women.

Sample Comments from HCDconnect users“Mara, I love how you did extensive Hear research and then focused on the mammogram gown as a niche that you could focus on / space where you could really make an impact. Was this part of a student project? How were you able to fund your research? This is a really wonderful project and a great road map for other designers looking to get started using human-centered design in the social sector.”

Mara, we met the other day with some great people at http://www.causes.com/. I was definitely impressed with how easy they’ve made it to start a fundraising campaign that’s integrated into Facebook in some pretty clever ways. Might be worth checking out Causes as a way both to further promote this amazing project and potentially start the process of getting funding to take it further. Best of luck and please keep us updated on your progress.—Sean Hewens, IDEO.org, Kenya

101Garment

“Fantastic project, and well thought out. I’m wondering if the gown could also be transferable to home use, for example, I wear one at the mammogram and then get to take it home with me, and maybe the pattern on the inside could be reversed, so it’s a visual guide as to how to feel my breasts for lumps - if that makes sense. Something about having the gown as a reminder AND as a tool to facilitate at home checks.”—Vanessa Carpenter, Copenhagen, Denmark (IDEO, 2012).

Bolstered by positive feedback from HCDconnect users, I’d like to apply for funding to continue the project after graduation. If I do continue to work on the project, the HCD Toolkit’s ‘Deliver’ methods will be a great help in the implementation phase.


103

CONCLUSION


With Mámala, I’ve tried to rewrite thesymbolic meaning of the hospital gown—from sickness to health,

from embarrassment todignity, from pink to green.

105Conclusion

In the realm of breast cancer, where life and death is at stake, redesigning a hospital gown may seem superficial and indulgent. The clothes we wear, however, have a profound effect on the way we feel. If the Mámala gown makes women feel even the slightest bit better about the mammogram experience, as I hope it will, then it’s a step, if small, in the right direction. And what if, as Vanessa suggests, the gown could act not only as a gesture, but also as a message and a tool? What if, as she suggests, the gown had applications outside of the mammogram environment? What if the gown was made out of some sort of smart, image producing fabric, and the exam was nothing more than putting on a comfy robe with morning coffee?

Wild ideas aside, sometimes it just helps to dress the part. A recent article in the New York Times discusses the study of “enclothed cognition,” which examines the “effects of clothing on cognitive process.” The study plays off of the theory of “embodied cognition,” which posits the claim that “we think not just with our brains but with our bodies.” If you wear a doctor’s white coat, says the study, you also wear the coat’s symbolic meaning—“that physicians tend to be careful, rigorous and good at paying attention”—and your ability to concentrate increases sharply (Blakeslee, 2012). With Mámala, I’ve tried to rewrite the symbolic meaning of the hospital gown—from sickness to health, from embarrassment to dignity, from pink to green.

As my dad is fond of saying when I’m feeling blue (quoting Billy Crystal’s Saturday Night Live impression of the Argentine actor Fernando Lamas), “Fernando, Fernando, don’t be a shnook, it’s not how you feel, it’s how you look. And you look mahvelous!” (IMDb, n.d.).


107

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All photos by Angela DeCenzo©, except: pages 22 and 29 by Doug Salin©pages 38, 42, 64, 76, 94 and 95 by Mara Finleypage 48 by Chris Downie©


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Mara Finley grew up in Berkeley, CA (oh yes, she was born in a commune), has a BA in English from Wesleyan University, and a long list of subsequent restaurant experience. She lives in a 1916 Craftsman house—her favorite design project—in San Francisco’s Excelsior district with her partner, Rick, and their two dogs, Nico and Fin.


Design for Dignity: A New Mammogram Experience

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