Social Media & Clinical Trials Recruitment 2012
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Social Media & Clinical Trials Recruitment 2012

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A talk by Amanda Yu and I for the BC Clinical Research Group, September 11th, 2012

A talk by Amanda Yu and I for the BC Clinical Research Group, September 11th, 2012

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  • DEAN’S SLIDEGood evening. Tonight’s presentation is entitled “Social media in clinical trials” that is the use of social media in clinical trials, their benefits and challenges that such use presents to researchers at a time when the electronic landscape is changing dramatically.My name is ……and my co-presenter is………We are pleased to be here and to have been invited by the Clinical Professional Researchers of BC.
  • DEAN’S SLIDEHere is our agenda for the next 30-40 minutes
  • DEAN’S SLIDELet’s begin with “What is social media”?Some typical tools in this domain are Facebook, LinkedIn and TwitterThey are characterized by openness, social support and two way communication…the term social media means different things to different people …there is general agreement that it involves online interactions between individuals who share common interests and activities [which] are facilitated by online sites such as Facebook & Twitter, video-sharing sites like YouTube and a network of blogs, online bulletin boards and e-forums …
  • DEAN’S SLIDEPharma needs to drop ‘human research subject’ nomenclature and call people people; or patients, or whatever they want to be called (hint: ask them).Why? Because although both points are valid, the language will alienate the very people the industry wishes to build relationships with. These descriptions make it sound like patients are being conscripted into a militia rather than being offered a chance to participate in a clinical trial. This is a counter-productive outcome, and one that could be easily avoided.Patients don’t want to be ‘recruited’ as ‘subjects’. They want to be invited to participate as people.Patients don’t want to be viewed as the recipients of ‘recruitment materials’ that are ‘disseminated’ through the networks they use.Rather, they want to be provided with compelling, relevant, personalized information from sources that present themselves in a credible, open-handed, friendly and trust-engendering manner as to why they should entrust their health to a clinical trial.
  • DEAN’S SLIDEPharma needs to drop ‘human research subject’ nomenclature and call people people; or patients, or whatever they want to be called (hint: ask them).Why? Because although both points are valid, the language will alienate the very people the industry wishes to build relationships with. These descriptions make it sound like patients are being conscripted into a militia rather than being offered a chance to participate in a clinical trial. This is a counter-productive outcome, and one that could be easily avoided.Patients don’t want to be ‘recruited’ as ‘subjects’. They want to be invited to participate as people.Patients don’t want to be viewed as the recipients of ‘recruitment materials’ that are ‘disseminated’ through the networks they use.Rather, they want to be provided with compelling, relevant, personalized information from sources that present themselves in a credible, open-handed, friendly and trust-engendering manner as to why they should entrust their health to a clinical trial.
  • DEAN’S SLIDEPharma needs to drop ‘human research subject’ nomenclature and call people people; or patients, or whatever they want to be called (hint: ask them).Why? Because although both points are valid, the language will alienate the very people the industry wishes to build relationships with. These descriptions make it sound like patients are being conscripted into a militia rather than being offered a chance to participate in a clinical trial. This is a counter-productive outcome, and one that could be easily avoided.Patients don’t want to be ‘recruited’ as ‘subjects’. They want to be invited to participate as people.Patients don’t want to be viewed as the recipients of ‘recruitment materials’ that are ‘disseminated’ through the networks they use.Rather, they want to be provided with compelling, relevant, personalized information from sources that present themselves in a credible, open-handed, friendly and trust-engendering manner as to why they should entrust their health to a clinical trial.
  • DEAN’S SLIDEhttp://www.doseofdigital.com/healthcare-pharma-social-media-wiki/List of over 350 pharmas, patient network sites, health professional sites. These groups are using Facebook, Twitter, blogs and Youtube to get their messages out. Look to these groups for ideas and inspiration for what works and what doesn’t on social media.
  • DEAN’S SLIDEClinical trials are the holy grailClinical recruitment sites; patient network websites; Trials don’t get accrual
  • AMANDA’S SLIDEPatientsLikeMe is a social networking site that enables members to share information about their conditions, treatments and symptoms. Members of PatientsLikeMe connect with other patients, gain social support and learn different ways to cope and manage their health conditionPatients come together to share personal information in social networks;Began in 2004 in Cambridge Mass. Population of 125,000 discussing over 1000 diseasesCo-founded by Jamie Heywood after his brother was diagnosed with ALS. The difficulties of bringing experimental drugs to trial and lack of support networksSimilar to Facebook and Twitter, PatientsLikeMe is a social networking site but focused on patients and the experience of being a patient; 30,000 participants from around the world categorized by and into five illnesses: 1) amyotrophic lateral sclerosis (ALS), 2) Parkinson's disease, 3) HIV/AIDS, 4) multiple sclerosis and 5) mood disorders such as depression Patients Like Me recently announced a new clinical trials service on their website that does a better job of providing value to patients than many recruitment efforts I've seen. The service is a searchable database of trials, and strictly speaking, it's not all that social.share medical histories; records, no identifying information; PLM sells information to drug, device, and insurance companies PatientsLikeMebuyers can mine data on a variety of chronic illnesses not available anywhere else
  • Goal of accelerating drug development and connecting patients in need with research studies.Use social networks and sophisticated screening and analytic techniques to create patient registries and feed clinical trialsWe’re talking about leveraging an existing community.Developing sophisticated system to match patients up with studies in ClinicalTrials.govUses an opt-in model to ensure the member chooses to share their information, their personal information isn’t being mis-used.Ensure the information in the forums is not trawled by search enginesOther aspects include changing the way research is done. Some examples include…1. Align the demographics of the online health communities with clinical trial protocol.2. Target specific online communities by carefully considering:• Whether or not the condition is considered “social”• The activity within the community• Frequently discussed topics3. Monitor effectiveness of social campaign by tagging post with tracking code4. Track date and frequency of posts, as well as the number of clicks to study website,responses to posts and discussions taking place to compare activity levels.5. Build credibility within the community:• Posts should provide relevant content• Tone should be attentive to the tenor of the dialogue• The frequency of interactions should be consistent• Responses to posts must be timely
  • AMANDA’S SLIDELow cost application; potential money saver; use it strategicallyReduces barriers for participation, gets information out about your researchLeverage existingcommunites and diversify patient pool
  • AMANDA’s SLIDELong awaited FDA guidelines did not provide the specific ‘dos and don’ts’ the industry was clamoring for. Mentions social media twice.IRBs may not have specific guidance and policies in place to deal with social media. Need to communicate with IRB to determine their requirements. Also need to consider the speed at which your IRB can approve changes, messaging. Social media requires timely response, can it wait for approvals of messages?Many of the principles we apply to traditional media can be translated to social media. Not be unduly coerciveNot promise favourable outcomesNot communicate the product is safeNot claim the product is superiorNot include product is approved by a regulatory bodyNot promise free treatmentNot emphasize paymentProvide information limited to the study and help patients determine eligibility and interesthttp://www.quorumreview.com/recording-slides-quorums-webinar-electronic-consent-technologies-facilitate-improve-research-process/?utm_source=rebar&utm_medium=blog&utm_term=IRB%2BReview&utm_content=externallink&utm_campaign=IRB%2BReview#.UEVZW6OB2ooUnblindingPatients would compare the physical characteristics of the drugs provided to determine if they were receiving the investigational medication or a placeboNon-adherenceOnline forum participants encouraged research subjects to withdraw if they didn’t feel they were benefitingFalsifying eligibilityPatients were advised online to inaccurately report their health informationAlso patients enrolling at a different site after being rejected at a firstBias in adverse event collectionPatients may read reactions on a forum and that may influence what side effects they, themselves experience
  • AMANDA’S SLIDE allow patients to participate from home by using smartphones and computers vs clinic check-ups attempt to develop a model to ease subject recruitment the study generated a lot of website traffic but it failed to convert that traffic into participants testing a drug for overactive bladder Challenges to recruitment? ‘newness’ of participating in research using social media the study itself – not a study where medications are lacking Successes online aspects for patients that did participate shoes promise they used multi-media informed consent, remote pateint ID verification, and had home-based visits via the InternetSet in Ohio; bladder; motivation
  • AMANDA’S SLIDESTAY SOCIAL!"Studies are often times designed in silos and target the 'unicorn,'" he says. "The study design may be great, but you will never find enough of those individuals to make it statistically significant yet they expect someone to go out and find those unicorns."For instance, he points to various studies, one of which shows 94 percent of people recognize the importance of participating in clinical research in order to assist in advancing medical science, but 75 percent of the general public state they have little to no knowledge about clinical research and the participation process. Another found that only 2 percent of the US population gets involved with trials each year. And while 44 percent of people find out about studies through the media, 14 percent gain information from their physicians (here are some survey findings).
  • DEAN’S SLIDE
  • “Studies are often times designed in silos and target the 'unicorn,'" he says. "The study design may be great, but you will never find enough of those individuals to make it statistically significant yet they expect someone to go out and find those unicorns."

Social Media & Clinical Trials Recruitment 2012 Presentation Transcript

  • 1. 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
  • 2. 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
  • 3. 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
  • 4. 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
  • 5. 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
  • 6. 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
  • 7. WHO IS OUT THERE? http://www.doseofdigital.com/Dean & Amanda | CRPBC Speaker’s Series | September 2012
  • 8. 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/
  • 9. PATIENTSLIKEME• Recruitment & accrual• i.e., Facebook & Twitter• patientslikeme.com Source: PatientsLikeMe.com Dean & Amanda | CRPBC Speaker’s Series | September 2012
  • 10. 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
  • 11. 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
  • 12. 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
  • 13. 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
  • 14. 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
  • 15. 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
  • 16. 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