social media and academic oncology

Social Media & Academic Oncology

Challenges and Opportunities

Matthew Katz, MD

December 2014

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

Overview

Social Media Definition Scope of Use

Risks & Benefits Clinical Practice Academic Medicine

Impact on Research Ethical Practical

Opportunities in Radiation Oncology

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

Social Media

Global reach

Easy access

Little technical expertise needed to use

Immediate impact

Dynamic content

Wikipedia, http://bit.ly/mZcwaH

Most active U.S. social websites

Data analytics firms track us, including NPI numbers

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

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

http://bit.ly/16cPIUH

Risks in Clinical Practice

Patients/Caregivers Misinformation

Loss of privacy

Psychologic amplification

Professionals Professional harm

Patient harm

Psychological harm

Benefits in Clinical Practice

Patients/Caregivers

Support

Education

Collaboration

Advocacy

Professionals

Coordinate Care

Collaboration

Networking

Education

Career Opportunity

Reputation Management

Social Media and Academic Medicine

Recruitment, Education & Training

Research Collaboration Crowdsourcing Funding Publication

Academic Promotion

Reputation

Recruitment

Who still buys textbooks?

Mentoring

Changing Dynamics of Mentorship

Geography less important

? Mentor at another institution

? Need to be in academics

What About Research?

http://bit.ly/OPVFxV

Innovate Yourself

#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

Symplur.com, http://bit.ly/1cAmuR7

#lcsm

Symplur.com

#gyncsm

Symplur.com

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

Collaboration

Hashtag project is one example

What about getting others to help you do your research?

• Released late September 2014

• 2 million slide high power fields analyzed by Thanksgiving

Harness Amateurs with Games

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

Funding

National Cancer Institute

National Institutes of Health

Funding Research

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

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

Thangasamy et al, Eur Urol 2014 , http://bit.ly/1io3Fx9

Publication

http://bit.ly/1HLbhKi

Source: Nick Kim, lab-initio.com

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

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

Source: Nature, August 2014go.nature.com/fjvxxt

Where you are the research subject?

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

Reputation

Once it’s digital, it’s not yours

Therapists at Fruit Street Clinic

Monitor Your Reputation

Mainstream media

Key social networks

And….

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

New York Medical College, http://bit.ly/1y8TlX9

Monitor Comments

Impact on Research

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?

flowingdata.com

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

http://nyti.ms/1m1AlR9

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

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

Open Access = More Citations?

S Lawrence, Nature 2001

Easier to disseminate

One RCT: no increased citations*

*Davis et al, BMJ 2008

Why Get Involved?

What is the alternative?

Radiation Oncology: Back to the Basement?

M Katz, Mayo SMHN, http://mayocl.in/1tqewx2

Research and Create New Worlds

http://bit.ly/1w01D3D

http://bit.ly/1w01D3D

http://bit.ly/1w01D3D

Audience by communication method

Bik HM, Goldstein MS. PLOS Biol 2013

Is Social Media Compatible?

Value Social Media

Medicine Science Academia

Accountability + + + +

Attribution + + + +

Medical Ethics + +

Engage Public +

Expertise + +

Hierarchy + +

Integrity + + + +

Persistence + + + +

Privacy +

Transparency +

Will it be valued?

Activity doesn’t guarantee Quality Rigor

Need metrics that matter to value social media activity for academic promotion

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

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

Questions?

You’re invited to contact me: Twitter: @subatomicdoc