Social Media in Patient Recruiment Andrew Smith


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Slides from a short presentation on how you might use social media around clinical trials, to build reputation and attract/retain patients to take part in clinical trials

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Social Media in Patient Recruiment Andrew Smith

  1. 1. Leaflets, how quaint… Social media in patient recruitment Andrew Smith Editor, Clinical Research focus Twitter: @CRfocus LinkedIn:
  2. 2. Clinical research online v1.0 Corporate websites Therapeutic area/study microsites Banner advertising (Google etc.) Patient group websites Clinical trial registries ( etc.)
  3. 3. Clinical research online v2.0 Blogs Discussion forums Facebook Twitter YouTube Big pharma, FDA etc. have started “channels” Not used specifically for patient recruitment… yet…
  4. 4. Detour: Twitter 101 Rapid communication within 140 characters Chronological stream of “tweets” from people you “follow” Accessible via web, mobile phones etc. “Retweet” others’ interesting messages to your followers Suggest who your followers might also want to follow (eg “Check out @crfocus for news & insights about #clinicalresearch #FollowFriday”) Auto-shortened links to websites (eg, Hashtags (eg, #clinicalresearch) to aggregate tweets by multiple users on same topic (Unofficial) database at Community-created feature
  5. 5. What are you trying to achieve? Awareness (condition, potential therapies, study(ies) etc.) Patients supporting each other Self-referral Community referral Participant support (compliance & retention) Create “authority”
  6. 6. The medium is the message Provide the tools for individuals to communicate One-to-one One-to-many Forward messages/links/content Enable individuals to connect with each other Friends & family in “real life” Based on shared interest (or condition) Friend-of-a-friend
  7. 7. Think social… It’s about the relationships Whose advice would someone listen to on their condition or joining a clinical trial? Indirect demographic targeting Where on the web would someone go related to the condition? • Popular condition-specific blog • Is there a Twitter hashtag? (If not, maybe start one?) Where else would someone of that age/gender/lifestyle go? Get involved, add value Expert comments on blogs Become part of the community
  8. 8. The medium is the mash-up Open standards on data structures (XML) Combine & analyse shared data from multiple sources “Widgets” to spread community & content via own sites/pages Websites providing automated suggestions Based on internal & external databases • GoogleHealth, Microsoft eVault, Electronic Patient Record •, EudraCT? eg, Online health record + + location One example: TrialX Community tools/forums, plus “experts” and investigators Start of “smart matching”
  9. 9. Downsides & dilemmas What will people be prepared to share? Semi-closed communities might encourage people to open up Pharma-driven communities might provoke more scepticism Good news travels fast, bad news travels faster … but this will happen whether you’re there or not! Data protection Specifics of permission & use of data Ethics approval for material circulated “virally” Loss of control of information & “message” Risk of unblinding if patients “compare notes” Can a tweet be an SUSAR report?
  10. 10. “And”, not “or” Social media should not displace traditional media in patient recruitment/retention Social media has relatively low direct conversion rate, but effective in promoting authority & engagement Monitoring traffic can be onerous, but it’s necessary Just because you’re not looking, doesn’t mean they stop talking about you! Requires sophisticated per-study blend of techniques Put the right tools in the right place, then let the net work… Experiment “socially” before you do it at work
  11. 11. Andrew Smith Editor, Clinical Research focus Twitter: @CRfocus LinkedIn:
  12. 12. Workshop: Questions for discussion What types of study (eg, phase, therapeutic area etc.) would be more or less effectively addressed using social media? How might you change the mix of old/new/social media based on a target study population? What could be done to prevent patients working out they’re on the same study & potentially unblinding themselves? Will data protection legislation & culture make Europe a laggard in this area? What information constitutes “publication” of an SUSAR by a patient? What implication might publication on Twitter or a blog have for regulatory reporting