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A talk by Amanda Yu and I for the BC Clinical Research Group, September 11th, 2012
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Social media in clinical trials: benefits & challenges in a changing e-landscape
Dean Giustini, UBC biomed librarian-instructor, wiki curator, bloggerAmanda 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
“…dozens of companies leverage social networking to accelerate trials & reduce costs… enrolling patients is a perennial challenge…1/3rd of trials fail to recruit a single patient …fewer than 20% complete on time, & most delays are attributed to recruitment…oncology trials fail to meet enrollment goals”
Dean & Amanda | CRPBC Speaker’s Series | September 2012
Allison M. Can web 2.0 reboot clinical trials. Nature Biotechnology. 2009 27: 895–902.
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
Source: Public engagement and clinical trials: new models and disruptive technologies
Dean & Amanda | CRPBC Speaker’s Series | September 2012
“…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…. presents
pharmaceutical 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
WHO IS OUT THERE?
Dean & Amanda | CRPBC Speaker’s Series | September 2012
http://www.doseofdigital.com/
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/
• Recruitment & accrual • i.e., Facebook & Twitter• patientslikeme.com
PATIENTSLIKEME
Dean & Amanda | CRPBC Speaker’s Series | September 2012
Source: PatientsLikeMe.com
Other Potential Opportunities?
• Protocol development• Crowdsourcing• Patient input on protocol
• Retention• Telemedicine• Mobile devices
• Data / clinical audits• Openness, transparency
Dean & Amanda | CRPBC Speaker’s Series | September 2012
Source: http://www.patientslikeme.com/clinical_trials
PATIENTSLIKEME
• 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
BENEFITS
Dean & Amanda | CRPBC Speaker’s Series | September 2012
• Regulatory issues (FDA “guidelines”)• Ethics (IRB/REB approvals)• Privacy (Patriot Act, confidentiality,
anonymity)• Data quality
CHALLENGES
Dean & Amanda | CRPBC Speaker’s Series | September 2012
“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)
• 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.
PFIZER CASE STUDY
Dean & Amanda | CRPBC Speaker’s Series | September 2012
REALITY CHECK
Dean & Amanda | CRPBC Speaker’s Series | September 2012
• 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)?
“Your Valtrex study will not go viral”Rahlyn Gossen, RebarInteractive.com
• Your views re: social media in clinical research?• Discussion re: patient confidentiality• HIPAA in the US; PIPEDA in Canada• Q & A (questions & answers)
FUTURE
Dean & Amanda | CRPBC Speaker’s Series | September 2012
See also: Consumer health 2.0 websites http://hlwiki.slais.ubc.ca/index.php/Consumer_health_2.0
• 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
REFERENCES
