Presentation

Consumer Health Informatics:Evidence-based decision making

by patients and families

Alexa T. McCray

Harvard Medical School

[email protected] Informatics: A Course for Health Professionals

June 2, 2010

Outline

• What is consumer health informatics?• Rise of active consumers• Public access to research results• Health literacy • National initiatives

Consumer Health Informatics

"a subspecialty of medical informatics which studies from a patient/consumer perspective the use of electronic information and communication to improve medical outcomes and the health care decision-making process."

AMIA Consumer Health Informatics Working Group

“Americans' pursuit of health takes place within a widening network of both online and offline sources. Whereas someone may have in the past called a health professional, their Mom, or a good friend, they now are also reading blogs, listening to podcasts, updating their social network profile, and posting comments.”

http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information.aspx

Rise of the Active Consumer

Online Health Searching

• Just half of adults with chronic conditions use the Internet; – once online, they are avid consumers of health information.

(2008)

• Most internet users start at a search engine when looking for health information online. – Very few check the source and date of the information they find.

(2006)

• As more Americans come online, more rely on the internet for important health information. – Fully 58% … say the single most important source of

information was something they found online. (2006)

http://www.pewinternet.org/Reports/2006/Online-Health-Search-2006.aspx

http://www.pewinternet.org/Reports/2008/The-Engaged-Epatient-Population.aspx

As a mother of 2 children with a rare disease, I wanted to receive and learnrelevant critical information and, I thought this could be achieved notthrough another's interpretation but through access to publications fromreputable journals.  If I didn’t understand something, I would find someonecapable of explaining. I wanted access to this critical information in orderto make informed decisions about care, to consider participation in clinicalstudies, and to expand my knowledge of research. In addition, I believe itis critical to have the ability to provide information to healthcareprofessionals who may not have had exposure to the condition. I believeaccess to information opens doors and when someone you love is ill, it isimportant to be adequately informed.

Access to Research Findings

http://www.taxpayeraccess.org/webcast070830/

Webcast recorded August 30, 2007

Pat Furlong, Founding President and CEO, Parent Project MuscularDystrophy, at the ATA Web cast for patient advocates, August 30, 2007

Scientific Literature

• Journal articles– Full text not available to the general public – Primarily accessible through academic institutional

subscriptions

• Subscription prices to published research have increased well beyond inflation

• Individual article prices prohibitive

Current Publishing Model

• Authors research, write, and submit papers to publishers for review

• Publishers coordinate peer review, provide editing and dissemination

• Authors transfer exclusive copyright to publishers• After copyright transfer

• Publishers own, and subsequently sell the content back to the academic community

• Authors have relinquished their rights to their intellectual output

Alternative Approaches

• Open Access Journals• Allow unrestricted use and distribution so long as

the original work is properly cited• Directory of Open Access Journals now lists > 4800

open access journals, including• PLoS Medicine, PLoS Biology, PLoS Genetics ..

• University Policies– Several universities have implemented voluntary

open access policies

• Public Access Policies

Public Access Policies

• NIH Public Access Policy • Authors deposit their NIH-funded papers in

PubMed Central• Applies to all peer-reviewed publications resulting

from NIH-funded research

• Federal Research Public Access Act • Extends NIH policy to encompass US agencies

with annual extramural research budgets of more than $100 million

Introduced in Senate June 25, 2009 by Lieberman (ID-CT) and Cornyn (R-TX) (S.1373), and in House of Representatives April 15, 2010 by Doyle (D-PA), Waxman (D-CA), Wasserman-Schultz (D-FL), Harper (R-MS),

Boucher (D-VA), Rohrabacher (R-CA) (HR 5037).

Health Literacy

• Health literacy is “the ability to understand and use health-related printed information in daily activities at home, at work, and in the community to achieve one's goals and to develop one's knowledge and potential.” – (National Assessment of Adult Literacy, 2003)

• Institute of Medicine– Health literacy is a convergence of education, health

services, and social and cultural factors

Health Literacy: A prescription to end the confusion. IOM 2004

http://nces.ed.gov/naal/fct_hlthliteracy.asp

Individuals- Education- Cognitive abilities- Social skills- Emotional state- Physical condition

Health contexts- Media- Marketplace- Government agencies- Hospitals- Doctors’ offices …

Health Literacy: A prescription to end the confusion. IOM 2004

eHealth Literacy

Norman CD, Skinner HA. eHealth literacy: Essential skills for consumer health in a networked world. JMIR 8(2). 2006

Analytic Skills- Traditional Literacy- Information Literacy- Media Literacy

Context-Specific Skills- Computer Literacy- Science Literacy- Health Literacy

Costs of Low Health Literacy

• Patients have– Lower self-management skills, less preventive care– Higher rates of chronic illnesses– Higher risk of hospitalization

• Poorer health outcomes– Contributes to health disparities– Contributes to overall cost of health care system

Schillinger D et al. Association of health literacy with diabetes outcomes. JAMA 2002

Howard DH. The relationship between health literacy and medical costs. IOM 2004

Paasche-Orlow et al. The causal pathways linking health literacy to health outcomes. Am J Health Behav 2007:19-26.

Betancourt J et al. Cultural competence and health care disparities. Health Affairs 2005; 24(2):499-505.

http://www.jointcommission.org/PublicPolicy/health_literacy.htm

What Did the Doctor Say?

Assessing Health Literacy Demands

• Readability formulas– Word familiarity, words per sentence, syllables per word

• Dale-Chall Formula (requires word lists)• McLaughlin SMOG Grading Formula• Fry Readability Graph, Gunning FOG Index, Flesch-Kincaid Formula,

Flesch Reading Ease

• Suitability Assesment of Materials (SAM)– Goes beyond readability to include content, layout, cultural issues

• PMOSE/IKirsch– Assessment of tables, graphs

Vivian AS, Robertson EJ. Readability of patient education materials. Clin Ther 1980

Ley P, Florio T. The use of readability formulas in health care. Psychology, Health & Medicine 1996

Mosenthal PB, Kirsch IS. A new measure forAssessing document complexity. J Adoles &Adult Literacy 1998; 41:638-54.

Doak CC et al. Teaching patients withlow literacy skills. 2nd edition 1996.

Recent National Initiatives

• Clinical and Translational Science Awards– As of June 2010, 46 awards in 26 states

• Up to 60 awards planned

– Broad range of programs and approaches– Core areas of research include

• Clinical & translational methodologies• Ethics• Regulatory issues• Education, disparities• Informatics• Community Engagement

CTSAweb.org

CTSA Community Engagement

• Each CTSA project has defined its community engagement program with more or less focus on one or more of the following topics:– Community-based participatory research– Recruitment into clinical trials– Practice-based networks– Patient education– Health disparities

Israel B et al. (2003). Critical issues in developing and following community-based participatory principles. Minkler M, Wallerstein N (Eds.), Community-based participatory research for health 2003:53-76.

Annual Conferences

• Partnering to improve health: The science of community engagement, May 2010– Methods, models, outcomes– Multidisciplinary contributions– Overcoming institutional issues– Building partnerships– Dissemination models– Role of IRB

www.aptrweb.org

Academic Research Centers● Harvard-affiliated investigators● Other CTSA’s ● Other academic research centers

Health related Organizations● Public health system

● Health care delivery system • Community-based providers• Community and academic health centers• Public and private health plans

● Community groups, civic institutions, places of employment

Communities● Residents of neighborhoods, cities, states, etc.

● Individuals defined by access to care

• Patients• Health plan members

● Individuals who share personal characteristics (culture, gender, race, employment, membership in affinity groups)

Local, Regional, State and National

Conceptual Model of Harvard Catalyst Community Engagement

Public Communication Initiative

• Engage the public in understanding medical research through education, dialogue, and partnerships

• Assess the optimal modalities for information sharing with individuals and communities

• Ultimate goal:– Empower individuals to make health decisions based

on the best available evidence

• Community Connect to Research (April 2009)– Formal evaluation summer 2009, summer 2010

https://www.connecttoresearch.org/

Collaborations

• Collaborative for Community Engagement and Research – Formed in September 2009 with additional stimulus

funding from the NIH– Collaboration among

• Harvard University, Boston University, Tufts University• Health Care for All• Community Health Centers in Massachusetts

• Community Connect to Research enhanced to reflect this collaboration– Scope extended to all of Massachusetts

Concluding Remarks

• Patient-centered health care, involving active consumers, implies shared responsibilities– Patients must have the motivation to ask

questions, explore resources, and add to their knowledge base

– Adequate, high quality resources must be available

– Health care professionals must be sensitive to the demands of the information they are imparting

– Only then can patients participate fully in shared decision making