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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
Increasing ParticipationIn 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 –

There are perverse incentives to make this epensive and inefficient


Worldview:

Needle in a haystack?


The haystack is made of needles…


Culture Shift

but biomedical research and healthcare lag…


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…


But healthcare can catch up
But healthcare can catch up

  • Collaboration: researchers, clinicians, disease advocates, consumers TOGETHER –

  • Invite reclaiming health – participants as partners


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


Information Highway

Disease Specific Data Elements

Common Data Elements

Trust

GamifiedSurvey

Education

Engagement

Reg4ALL.org


Information Highway

Disease Specific Data Elements

Common Data Elements

Trust

Education

Gamified Survey

Engagement

Reg4ALL.org


  • 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.


Onward to the we
Onward to the WE

N = They

N = Me

N = WE


“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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