Social Media & Clinical Trials Recruitment 2012

Social media in clinical trials:benefits & challenges in a changing e-landscape Dean Giustini, UBC biomed librarian-instructor, wiki curator, blogger Amanda Yu, CRPBC Co-Chair & Social Media Coordinator, MPH graduate Clinical Professional Researchers of BC (CRPBC) Speakers Series, September 11th, 2012

AGENDA• Introduction(s)• Context: social media for clinical trials• Rationale: making a case for social media • Benefits; recruitment, crowdsourcing, transparency • Challenges; ethics, privacy• Future: social media, what’s possible?• Questions See also: http://hlwiki.slais.ubc.ca/index.php/Social_media_in_clinical_trials Dean & Amanda | CRPBC Speaker’s Series | September 2012

CONTEXT• What is social media? • Facebook, LinkedIn & Twitter • Openness & social support • A sense of community …social media means different things to different people …there is agreement that online interactions between individuals who share common interests and activities are facilitated by sites such as Facebook & Twitter, video-sharing sites i.e., YouTube and blogs, online bulletin boards & e-forums … Dean & Amanda | CRPBC Speaker’s Series | September 2012

CONTEXT Allison M. Can web 2.0 reboot clinical trials. Nature Biotechnology. 2009 27: 895–902. “…dozens of companies leverage social networking to accelerate trials & reduce costs… enrolling patients is a perennial challenge…1/3rd of trials failto recruit a single patient …fewer than 20% complete on time, & most delaysare attributed to recruitment…oncology trials fail to meet enrollment goals” Dean & Amanda | CRPBC Speaker’s Series | September 2012

POWER OF SOCIAL• Vast potential of social network(s)• Facebook has over 1 billion users; Twitter very popular• Social media used to stay informed• Vital channel for public re: clinical research• Rapid growth driven by mobile devices & apps• Expand pool of research subjects• Power of network & even cost containment Dean & Amanda | CRPBC Speaker’s Series | September 2012

SOCIAL ENGAGEMENT“…Social media’s future lies in the recruitment of human subjects for research; slow subject recruitment is one of the biggest barriers to advancements in medical science…. presentspharmaceutical companies, large and small, with promising ways of enhancing recruitment: 1. Direct recruitment through disease-specific online communities and … 2. Dissemination of recruitment information via social networks Source: Public engagement and clinical trials: new models and disruptive technologies Dean & Amanda | CRPBC Speaker’s Series | September 2012

WHO IS OUT THERE? http://www.doseofdigital.com/Dean & Amanda | CRPBC Speaker’s Series | September 2012

CLINICAL TRIAL RECRUITMENT SITES• Clinical Connection http://clinicalconnection.com• Diabetic Connect http://www.diabeticconnect.com/• Emerging Med Navigator http://www.emergingmed.com/• Mediguard https://www.mediguard.org/• Inspire http://www.inspire.com/

PATIENTSLIKEME• Recruitment & accrual• i.e., Facebook & Twitter• patientslikeme.com Source: PatientsLikeMe.com Dean & Amanda | CRPBC Speaker’s Series | September 2012

PATIENTSLIKEMEOther Potential Opportunities?• Protocol development • Crowdsourcing • Patient input on protocol• Retention • Telemedicine • Mobile devices• Data / clinical audits Source: http://www.patientslikeme.com/clinical_trials • Openness, transparency Dean & Amanda | CRPBC Speaker’s Series | September 2012

BENEFITS• Potential Money-$aver (if used strategically)• Diversified patient pool• Overcoming geographic barriers• Access rare diseases & “rare” populations• Access to new networks previously unseen Source: Boden-Albala B, et al (2011). Social network types and acute stroke preparedness Dean & Amanda | CRPBC Speaker’s Series | September 2012

CHALLENGES• Regulatory issues (FDA “guidelines”)• Ethics (IRB/REB approvals)• Privacy (Patriot Act, confidentiality, anonymity)• Data quality “The rapid growth of the Internet, including social media tools and other emerging technologies, has made it easier for both consumers and health care professionals to quickly seek information about medical conditions and treatments.” ~ US Food and Drug Administration (USFDA) Dean & Amanda | CRPBC Speaker’s Series | September 2012

PFIZER CASE STUDY• PFIZER developed novel way of using social media & mobiles for virtual clinical trials• Patients used social media to influence reimbursement & direction of research• Chief medical officer said virtual plan reduced barriers to participation• Motivation; consistent experience is important; didn’t vary by location; saved money• However, in mid 2012, Pfizer ended its experiment Pfizer ends social media bid for trial recruitment. Pharmalot. 2012. Dean & Amanda | CRPBC Speaker’s Series | September 2012

REALITY CHECK“Your Valtrex study will not go viral” Rahlyn Gossen, RebarInteractive.com • Social media platforms are tools – use the right tool for the right job! (And use it correctly!) • What are you trying to achieve? • Who are you trying to reach? • How do you want to reach them? • Did you achieve your goal? • What’s the ROI (return on investment)? Dean & Amanda | CRPBC Speaker’s Series | September 2012

FUTURE• Your views re: social media in clinical research?• Discussion re: patient confidentiality• HIPAA in the US; PIPEDA in Canada• Q & A (questions & answers) See also: Consumer health 2.0 websites http://hlwiki.slais.ubc.ca/index.php/Consumer_health_2.0 Dean & Amanda | CRPBC Speaker’s Series | September 2012

REFERENCES• Allison M. Can web 2.0 reboot clinical trials. Nature Biotechnology. 2009 27: 895–902.• Baldwin M, Spong A, Doward L. Patient-reported outcomes, patient-reported information: from randomized controlled trials to the social web and beyond. Patient. 2011;4(1):11-7.• Chan XH, Wynn-Jones W, Lobban C. Time for an open access secure online data collection tool. BMJ. 2012 Jul 16;345:e4805.• Coons S. Communication through social media: its potential and pitfalls. Research Practitioner. 2012;13(2):44-50.• Daley T. Consumer health information sources in the 21st century. DJIM. 2011;7• Etkin C, Farran C, Barnes L, Shah R. Recruitment and enrollment of caregivers for a lifestyle physical activity clinical trial. Research In Nursing & Health. 2012;35(1):70-81.• Foulkes M. Social contexts, social media, and human subjects research. Am J Bioeth. 2011 May;11(5):35-6.• Frawley H, Whitburn L, Daly J, Galea M. E-recruitment: the future for clinical trials in a digital world. Neurourology and Urodynamics, 2011.• Frydman, G. Patient‐driven research: rich opportunities and real risks. J Participat Med. 2009(Oct);1(1):e12.• Glickman SW, Galhenage S, McNair L. The potential influence of Internet-based social networking on the conduct of clinical research. J Empir Res Hum Res Ethics. 2012;7(1):71-80.• Granzyk T. Putting social networks on trial. Health Data Manag. 2012;20(2):92, 94-6.• Kietzmann JH, Hermkens K. Social media? Get serious! Understanding the functional building blocks of social media. Business Horizons. 2011;54(3):241-251.• Marton C. Consumer health 2.0 in Canada: a descriptive analysis of Web 2.0 technologies on Canadian consumer health information websites. JCHLA / JABSC. 2011;32(1):29-34.• Silverman E. Pfizer ends social media bid for trial recruitment. Pharmalot. 19 June 2012.• Swan M. Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem. J Medical Internet Research. 2012;14(2):5.• Weitzman ER. Sharing data for public health research by members of an international online diabetes social network. PLoS One. 2011;6(4):e19256.• Wicks P, Vaughan TE, Massagli MP, Heywood J. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol. 2011 May;29(5):411-4. See also Social media in clinical trials: http://hlwiki.slais.ubc.ca/index.php/Social_media_in_clinical_trials

http://blogs.ubc.ca	927
http://pharmatrends.org	195
http://ehealth.med.ubc.ca	24
https://twitter.com	5
http://blogs.ubc.ca.ezproxy.library.ubc.ca	2
http://ehealth.sites.olt.ubc.ca	2
http://search.daum.net	1
http://translate.googleusercontent.com	1
http://www.linkedin.com	1

Social Media & Clinical Trials Recruitment 2012

by Dean Giustini on Sep 10, 2012

Accessibility

Categories

Upload Details

Usage Rights

9 Embeds 1,158

Statistics

Social Media & Clinical Trials Recruitment 2012 Presentation Transcript