Social Media and Academic Oncology
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Social Media & Academic Oncology
Challenges and Opportunities
Matthew Katz, MD
December 2014
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Conflict of Interest
Partner, Radiation Oncology Associates PA
Medical Director of Radiation Medicine, Lowell General Hospital
External advisor, Mayo Clinic Center for Social Media
Founder, nonprofit blog Radiation Nation
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Overview
Social Media Definition Scope of Use
Risks & Benefits Clinical Practice Academic Medicine
Impact on Research Ethical Practical
Opportunities in Radiation Oncology
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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
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Social Media
Global reach
Easy access
Little technical expertise needed to use
Immediate impact
Dynamic content
Wikipedia, http://bit.ly/mZcwaH
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Most active U.S. social websites
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Data analytics firms track us, including NPI numbers
Creation Pinpoint, http://bit.ly/1hU6Kqd
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Rapid Adoption in U.S.
In the US:35% have searched for a medical condition online
80% start with a search engine
Pew Internet Pew Internet http://bit.ly/1moDRZ4 http://bit.ly/1gXxHv7
N = 1,445, Sept. 2013
42% of adults are using social networks
N=3,014, Sept. 2012
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http://bit.ly/16cPIUH
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Risks in Clinical Practice
Patients/Caregivers Misinformation
Loss of privacy
Psychologic amplification
Professionals Professional harm
Patient harm
Psychological harm
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Benefits in Clinical Practice
Patients/Caregivers
Support
Education
Collaboration
Advocacy
Professionals
Coordinate Care
Collaboration
Networking
Education
Career Opportunity
Reputation Management
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Social Media and Academic Medicine
Recruitment, Education & Training
Research Collaboration Crowdsourcing Funding Publication
Academic Promotion
Reputation
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Recruitment
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Who still buys textbooks?
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Mentoring
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Changing Dynamics of Mentorship
Geography less important
? Mentor at another institution
? Need to be in academics
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What About Research?
http://bit.ly/OPVFxV
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Innovate Yourself
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#bcsm – Breast Cancer & Social Media
Weekly Twitter chats start July 4, 2011
Organized by two advocates, breast surgeon
Focus on advocacy, survivorship, support, metastatic breast cancer, new research
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Symplur.com, http://bit.ly/1cAmuR7
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#lcsm
Symplur.com
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#gyncsm
Symplur.com
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Communities with Chats
Group When Tweets 2013
2014* Δ
#ayacsm Every 3rd Thursday, 4 PM EST 199 19588 9700%
#bcsm Monday, 9 PM EST 84391 80356 -5%
#btsm 1st Sunday, 10 PM EST 49077 50431 3%
#gyncsm 2nd Wednesday, 9 PM EST 4374 15649 258%
#lcsm Every other Thursday, 8 PM EST 32339 70142 117%
#mmsm 3390 9208 172%
#pancsm Every 1st Thursday, 9 PM EST 257 3052 1087%
Symplur.com
* Tweets through Nov 27 2014
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Collaboration
Hashtag project is one example
What about getting others to help you do your research?
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• Released late September 2014
• 2 million slide high power fields analyzed by Thanksgiving
Harness Amateurs with Games
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Improving Clinical Trials
Potential Use Example Journal PMID
Recruitment,Lower costs
Smoking CessationFacebook recruiting
JMIR 25348050
Adherence Smoking Cessation JNCI 24395994
Investigator Training
Informed Consent
Clinical Trial Design Protocol draft wikis
Let public design/vote
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Funding
National Cancer Institute
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National Institutes of Health
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Funding Research
Accessed 3/15/14http://bit.ly/OPVUsB
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Academic Disadavantage = Overhead
Accounts for $10B of NCI budget
69% for Harvard as of 2013
What if NIH favors proposals with little or no overhead?
Boston Globe, 3/18/2014
http://bit.ly/11Da86G
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Thangasamy et al, Eur Urol 2014 , http://bit.ly/1io3Fx9
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Publication
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http://bit.ly/1HLbhKi
Source: Nick Kim, lab-initio.com
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Social Networking for Academics
Users Article Uploads/Day 14 M 15,000
3 M
5 M 71,000
Source: The Lancet, Nov 2014
http://bit.ly/1ykZeOA
1300 share negative results, raw dataevery day
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Motivations for Public Data Sharing
Reason for Sharing %
Standard practice 57%
Increase visibility and impact 55%
Public benefit 50%
Journal requirement 42%
Transparency, re-use 37%
Personal trust in requester 30%
Discoverability, accessibility 25%
Funder requirement 23%
Institutional requirement 18%
Freedom from information request 13%
Preservation 13%
N = 22503% response rate
Source: Wiley, March 2014. http://bit.ly/1rz4UQf
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Source: Nature, August 2014go.nature.com/fjvxxt
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Where you are the research subject?
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Sorrell v. IMS Health
Vermont created legislation to prevent doctor prescription data mining by pharmacies selling data to drug marketers
Supreme Court recently ruled 6-3 in favor of IMS Health because VT “burdens the speech of pharmaceuticals and data miners”
Focus on harm to commercial free speech
Sorrell v. IMS Health, 10-779
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Reputation
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Once it’s digital, it’s not yours
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Therapists at Fruit Street Clinic
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Monitor Your Reputation
Mainstream media
Key social networks
And….
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PubMed 2.0 – Comment on Abstracts
Disease Trial Journal + Year PMID
Anal Canal RTOG 87-04 JCO 1996 8823332
Bladder BC 2001 NEJM 2012 22512481
Breast NSABP B-06 NEJM 1985 3883167
Cervix GOG NEJM 1999 10202165
Esophagus RTOG 85-01 NEJM 1992 1584260
Glioblastoma EORTC-NCIC NEJM 2005 15758009
Larynx VA Larynx NEJM 1991 2034244
Lung CALGB 8433 NEJM 1990 2169587
Lung RTOG 0236 JAMA 2010 20233825
Prostate EORTC NEJM 1997 9233866
Prostate EORTC 22911 Lancet 2012 23084481
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New York Medical College, http://bit.ly/1y8TlX9
Monitor Comments
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Impact on Research
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Ethics in Flux
Newer research models may conflict directly with Belmont Report
HIPAA an issue as well
Do we need to adapt current ethical frameworks?
How should these technologies be used?
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flowingdata.com
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Saliva SNPs for detecting risk of disease
$99
No genetic counseling
Shut down by FDA 11/2013
Direct to Consumer (DTC) Research
FDA, http://1.usa.gov/1nVOyUt
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http://nyti.ms/1m1AlR9
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Research in an Apomediated World
Subjects play more active role
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?
D O’Connor, J Law Med Ethics 2013
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Social Media and Citations
G Eysenbach, J Med Int Res 2011
Correlation only?
One RCT: no increased citations*
Altmetrics used for Impact Factor
*Fox CS et al, Circulation 2014
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Open Access = More Citations?
S Lawrence, Nature 2001
Easier to disseminate
One RCT: no increased citations*
*Davis et al, BMJ 2008
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Why Get Involved?
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What is the alternative?
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Radiation Oncology: Back to the Basement?
M Katz, Mayo SMHN, http://mayocl.in/1tqewx2
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Research and Create New Worlds
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http://bit.ly/1w01D3D
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http://bit.ly/1w01D3D
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http://bit.ly/1w01D3D
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Audience by communication method
Bik HM, Goldstein MS. PLOS Biol 2013
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Is Social Media Compatible?
Value Social Media
Medicine Science Academia
Accountability + + + +
Attribution + + + +
Medical Ethics + +
Engage Public +
Expertise + +
Hierarchy + +
Integrity + + + +
Persistence + + + +
Privacy +
Transparency +
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Will it be valued?
Activity doesn’t guarantee Quality Rigor
Need metrics that matter to value social media activity for academic promotion
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Summary
Social media are powerful communications tools
Rapid adoption despite poorly defined risks & benefits
More connected = more reward and risk
Increasing attention in major journals
Academic oncology needs to help us research best use in cancer care
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Thank You
Jay Harris
Anthony D’Amico and Anthony Zietman
Tracy Balboni and Akila Viswanathan
Lee Aase, Meredith Gould, Patricia Anderson
Twitter mentors and collaborators
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Questions?
You’re invited to contact me: Twitter: @subatomicdoc