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Increasing Participation In Clinical Trials

Increasing Participation In Clinical Trials. Sharon F. Terry President & CEO. The Problem. Recruiting for clinical trials is like searching for a needle in a haystack : laborious, time consuming, and often fruitless. Lack of alignment of incentives –

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Increasing Participation In Clinical Trials

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  1. Increasing ParticipationIn Clinical Trials Sharon F. Terry President & CEO

  2. The Problem Recruiting for clinical trials is like searching for a needle in a haystack: laborious, time consuming, and often fruitless. Lack of alignment of incentives – There are perverse incentives to make this epensive and inefficient

  3. Worldview: Needle in a haystack?

  4. The haystack is made of needles…

  5. Culture Shift but biomedical research and healthcare lag…

  6. WHY? • Ignoring networks • Lack of awareness • Lack of trust in research enterprise • Complexity in understanding what is good for me? Where do I fit? But – given the tools, and the right “ask” - people are willing to participate…

  7. But healthcare can catch up • Collaboration: researchers, clinicians, disease advocates, consumers TOGETHER – • Invite reclaiming health – participants as partners

  8. Join Reg4All or TrialsFinder 13,000 disease pages Hundreds of thousands of visitors High SEO Pharma and Biotech analyzing data to choose diseases DiseaseInfoSearch.org

  9. Information Highway Disease Specific Data Elements Common Data Elements Trust GamifiedSurvey Education Engagement Reg4ALL.org

  10. Information Highway Disease Specific Data Elements Common Data Elements Trust Education Gamified Survey Engagement Reg4ALL.org

  11. View and download data and reports through RecruitSource app • Access to de-identified data • Access to contact information to recruit • Full data download • ALL of the above are dependent on the privacy settings of each individual.

  12. Onward to the WE N = They N = Me N = WE

  13. “You never change things by fighting existing reality.  To change something, build a new model that makes the existing model obsolete.” Buckminster Fuller Build the WE

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