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Social media are pervasive, powerful communications tools. What are the risks and benefits of using them in cancer care? I discuss it in this talk at Yale April 10, 2014.
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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