Social Media and Medicine: Relevance to Cancer Care

SOCIAL MEDIA AND MEDICINERelevance to Cancer Care

Conflict of Interest

External advisor, Mayo Clinic Center for Social Media

Previous consulting for Augmenix, Inc (2012-May 2013)

No financial links, leadership position with any social media company

Overview

Social Media Definition Types Role in Medicine

Risks and Opportunities Clinical Research

Why it matters in cancer care Ethical Practical

Summary

http://www.slideshare.net/subatomicdoc

Definition

“Social media are web-based tools for interaction that, in addition to conversation, allow users to share content such as photos, videos, and links to resources”

-- Meredith Gould, The Social Media Gospel

Brave New World

Geography doesn’t matter as much as internet access

Communities are defined by interest, not location

New dynamics for previously isolated people

Social Networking Sites

Nov 2013 data

Source: Business Insider http://read.bi/1irEope

Rapid Adoption in U.S.

In the US:35% have searched for a medical condition online for diagnosis

80% start with a search engine

N=3,014, Sept. 2012Source: Pew Internet Source: Pew Internet http://bit.ly/1moDRZ4 http://bit.ly/1gXxHv7

N = 1,445, Sept. 2013

42% of adults are using social networks

Patient Oriented Sites

http://on.fb.me/1jiIiUW

Institute of Medicine report

Grajales et al, IOM/PLM 2014http://bit.ly/1deNg2g

CR [1058] PLM [2125]

Age 60+ 30% 23%Fair/poor health 15% 54%Specialist is main provider 3% 17%Feel medical care isn’t coordinated 30% 37%Want more health information sharing 95% 98%

CR = Consumer Reports surveyPLM = Patientslikeme

Data Sharing: PatientsLikeMe

Willing to share de-identified data with: MDs 94% Researchers 92% Drug companies 84% Public Health officials 77%

Perception of how likely PHI might be used 76% without my knowledge 72% to deny health benefits 66% to limit job opportunities 61% stolen by individuals or companies

Grajales et al, IOM/PLM 2014http://bit.ly/1deNg2g

Track and Interact

Activity No Conditions 1 Condition 2+ ConditionsSelf-track health metrics 61% 70% 80%Trackers share notes w/others

30% 39%

Trackers with chronic conditions 41% use pencil/paper 4% mobile phone app 1% use a website

Source: Pew Internethttp://bit.ly/1gXxHv7

For Professionals

http://bit.ly/1dDJtq3

http://bit.ly/1fRMP8Q

Rapid growth of professionals on Twitter

• Data analytics firms track us, including NPI numbers

Creation Pinpoint, http://bit.ly/1hU6Kqd

Cancer on Twitter

Organization Twitter Handle FollowersWorld Health Organization @WHO 1.2 MMayo Clinic @MayoClinic 754 KAmerican Cancer Society @AmericanCancer 457 KHealth Human Services @HHSGov 369 KScience Magazine @ScienceMagazine 249 KNEJM @NEJM 177 KLancet @TheLancet 111 KNational Cancer Institute @theNCI 51 KInstitute of Medicine @theIOM 31 KMD Anderson @MDAndersonNews 26 KASCO @ASCO 24 KAACR @AACR 18 KRSNA @RSNA 14 KAmerican College of Surgeons @AmCollSurgeons 14 K

Twitter data, March 29, 2014

Surgeons on TwitterPerson Institution Twitter Handle Followers

Sanjay Gupta Emory-CNN @drsanjaygupta 1.8 M

Atul Gawande Brigham & Women’s @AtulGawande 85 K

Diane Radford @dianeradfordmd 5985

Deanna Attai @DrAttai 5535

Susan Love @DrSusanLove 4480

David Gorski Karmanos/Wayne State @oracknows 4270

Aaron Cohen Gadol Indiana University @AaronCohenGadol 2415

Tom Varghese, Jr. UW/Seattle CCA @TomVargheseJr 2303

Brian Stork @StorkBrian 2249

Niraj Gusani Penn State @NirajGusani 2068

Stacy Loeb NYU @loebstacy 1619

Matthew Cooperberg UCSF @dr_coops 1576

Twitter data, March 29, 2014

Medical Oncology on TwitterOncologist Institution Twitter Handle FollowersSteven Eisenberg @drseisenberg 21.9 KAnas Younes MKSCC @DrAnasYounes 10.1 KSteven Tucker @drsteventucker 8096Naoto Ueno MDACC @teamoncology 7708Michael Fisch MDACC @fischmd 7707Elaine Schattner Columbia @ElaineSchattner 6764H. Jack West Swedish Hospital @JackWestMD 5689Robert Miller JHMI @rsm2800 5483Mike Thompson Aurora Health @mtmdphd 4849Robert Orlowski MDACC @Myeloma_Doc 2818Pervez Dara @JediPD 2351Wafik El-Deiry Penn State @weldeiry 2178Don Dizon MGH @drdonsdizon 2232Julie Gralow U Wash/Seattle CCA @jrgralow 1818

Source: Twitter, 3/29/2014

Radiation Oncology on TwitterRadiation Oncologist Institution Twitter Handle Followers

Shalin Shah MDACC Sugarland @ShalinJShahMD 8416Matthew Katz @subatomicdoc 7218Krupali Tejura @krupali 4872Colin Champ UPMC @CavemanDoctor 2859Ian Pereira* Kingston (Canada) @IanJohnPereira 1273

Mary Gospodarowicz PMH @marykge 691Jonathan Livergant* U Toronto @jpil 680Cary Gross Yale @cpgYALE 580Leah Minnie Katz NYU @leah_minnie 516C. Dave Fuller MDACC @cd_fuller 383Miriam Knoll* Mount Sinai @Mknoll_MD 250Wally Curran Emory @wallyjc 244Brandon Mancini* Yale @brandonmancini 200

Source: Twitter, 3/30/2014* Resident

Cancer Hashtags on Twitter

Hashtag Tweets 2013 Impressions 2013

#oncology 36821 108162977#breastcancer 374176 1482780746#bcsm 49077 359715942#lungcancer 53609 173792419#lcsm 32339 59175200#coloncancer 23520 109520148#crcsm 1278 3829527#prostatecancer 33182 133968946#pcsm 2333 6671329#gyncsm 4374 4185558

Source: Symplur.com

What is Stopping Us?

QuantiaMD.com, 2011 http://bit.ly/OKR00w

Risks of Social Media

Patients/Caregivers Misinformation

Information bias Omission

Loss of privacy Job/insurance

discrimination Marketing manipulation

Psychologic amplification

Professionals Professional harm

Reputation Malpractice

Patient harm Loss of boundaries Misinterpreted/bad

communication Psychological harm

Split personality Burnout

Benefits of Social Media

Patients/Caregivers Support Education Collaboration Advocacy

Professionals Coordinate Care Collaboration Networking Education Career Opportunity Reputation

Management

Learning From Patients

http://bit.ly/1jiR1Gs

Learning – Patient Education

http://bit.ly/1bYlAdQ

Medical Education

http://bit.ly/1dILSVS

Share Your Expertise

http://slidesha.re/1hTBgk7

Advocacy

On Facebook, Twitter Assists with building radiation facilities and raising

cancer funding globally www.radiatinghope.org

Tumblr, http://bit.ly/1ivKPaA

Online Search = Privacy Risk

Web surfing may give your search information

65% of sites have at least 1 tracker

35% leaked information to 3rd parties

Martin Huesch, JAMA Int Med 2013

Google Glass

Katz M, KevinMD.com, http://bit.ly/OPUY7M

Who represents doctors?

Silent since 10/2013

Date of download: 2/9/2014 Copyright © 2014 American Medical Association. All rights reserved.

From: Physician Violations of Online Professionalism and Disciplinary Actions: A National Survey of State Medical Boards

JAMA. 2012;307(11):1141-1142. doi:10.1001/jama.2012.330

Bar length indicates total frequency for each violation type.

Figure Legend:

Doctors are public figures

UK survey of 953 respondents in general public Professionalism based upon

clinician workmanship citizenship

Respondents expect doctors to be: confident reliable composed accountable dedicated

Chandratilake et al, Clin Med 2010

@Doctor_V @Berci @SeattleMamaDoc

@DrJenGunter @KevinMD @hjluks

@doctorwes @oracknows @KentBottles

@amcunningham

@RyanMadanickMD

@drmikesevilla

What About Research?

http://bit.ly/OPVFxV

Funding Research

Accessed 3/15/14http://bit.ly/OPVUsB

Harnessing Amateurs

ScienceDaily.com, http://bit.ly/1jz55HJ

Gamification of Science

Playstation3 >130,000 players Geek.com, http://bit.ly/1gZNOs3

DNA Analysis by Smartphone

1.5 M chromosomes analyzed in 1 month Available for iOS, Android

Cancer Research UK, http://bit.ly/1hduzYD

Parkinson’s on PatientsLikeMe

Accessed 4/6/2014, http://bit.ly/1lJ2cbX

Community or research cohort?

PLM has two peer-reviewed publications on Parkinsons

Up to 50% of patients develop psychosis Large cohort had 28% incidence of dementia

by DSM-IV criteria

Does terms of service count as consent?

Fenelon and Alves, J Neurol Sci 2010 http://1.usa.gov/1hiYXG9 Riedel et al, J Neurol 2008 http://1.usa.gov/1jROYqR

Wall Street Journal

Published 10/12/2011http://on.wsj.com/1hU8zDA

• AC Nielsen removes data from website directly

• “I felt totally violated”

•"We're a business, and the reality is that someone came in and stole from us," says PatientsLikeMe's chairman, Jamie Heywood.

Personal genomics services Saliva SNPs for detecting risk

of disease Test for $99 Direct to consumer, no genetic

counseling Shut down by FDA 11/2013 for not

complying with required testing Interference with empowered

patient/consumer rights

Direct to Consumer Research

Source: FDA, http://1.usa.gov/1nVOyUt

DTC Personal Genomics

No corporate transparency No evidence test works Privacy risks Vague whether genome used for research Allows children/vulnerable populations to be

tested No discussion or review with a genetic

counselor

http://bit.ly/18jOCku

http://nyti.ms/1m1AlR9

What about academic medicine?

Ethics in Flux

Newer research models conflict directly with more traditional interpretation of Belmont Report, bioethics

HIPAA an issue as well

Do we need to adapt current ethical frameworks, or how these technologies are used?

Research in an Apomediated World

Subjects can play a more active role in research

How do you regulate “when it is not clear who the researcher is and who the subject is”

What role for IRBs if done online only?

How can you separate trial recruitment from solicitation?

Dan O’Connor, J Law Med Ethics 2013

Does Autonomy Trump All?

Autonomy favors empowered patient/consumer rights

Survey of 51, 946 show that patients with highest satisfaction scores had worse outcomes than least satisfied Inpatient hospitalization OR 1.12 Total health expenditures 8.8% higher All-cause mortality OR 1.26

Fenton et al, Arch Int Med 2012

WHO Definition of Health

Oath of Maimonides

“Grant me the strength, time and opportunity always to correct what I have acquired, always to extend its domain; for knowledge is immense and the spirit of man can extend indefinitely to enrich itself daily with new requirements.”

Extend Your Domain Online

Bik & Goldstein, PLOS One 2013

Relevance to Research

Only 0.04% of published medical research gets mainstream attention

Social media provides a way to share your research with patients, caregivers who may directly benefit

Twitter and Academic Citations

Eysenbach, JMIR 2011

Altmetrics correlates with impact factor

11 Components: Tweets Facebook posts Blog posts Google+ Nature Publishing Group highlights Reddit Forum threads Q&A Pinterest LinkedIn

Thelwall et al, PLOS ONE 2013

Annual Meeting Twitter Activity

Katz M, ASCO Connection 2013 http://bit.ly/Q9LfdJ

Followers Magnify the Message

Katz M, ASCO Connection 2013 http://bit.ly/Q9LfdJ

Practical

Cancer patients and caregivers are increasingly online, seeking help and support

If clinicians and researchers don’t engage, expect more influence on health decisions by Peers and family Fearmongerers, opportunists Industry

Participation is not optional

Summary

Social media are pervasive, powerful communications tools

Rapid adoption in healthcare despite poorly defined risks and benefits

More connected = more reward and risk

Research is critical to develop safe effective use in cancer care

Thank you