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Patient-Centered Research Network With Google Health: Overcoming Barriers in PSC Database

A collaborative application to connect patients and researchers, overcoming barriers in access and accuracy. Join the community for PSC research using Google Health applications.

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Patient-Centered Research Network With Google Health: Overcoming Barriers in PSC Database

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  1. PSC Research Network • A Collaborative Application with Google Health

  2. Barriers to PSC Database • Most patient databases are University Hospital based • Limited access outside of urban areas • Limited number of PSC Research Centers • Requires referral from community providers

  3. Internet-based Patient-Centered Database • Pros • Accessible to patients regardless of location • Optimize linkage between patients and researchers • Inexpensive • Cons • Accuracy/Completeness of patient-entered data • Acceptance by patients • Privacy/Security/Administration of Data

  4. PSC-RN - Purpose and Goals • Purpose : To establish a robust collaborative community for PSC researchers and patients, using Google Health and Google Apps Engine to build new applications software • Goals: • To discover definitive factors in a researcher – patient collaborative community • Identify necessary services for patients to participate in the research process (trial design, recruitment, participation, monitoring) • To characterize the most productive interactive services between patients during the research process T. Hill, PSC - Google Project, Jan. 2010

  5. PSC-RN • Patients • Demographics, specific symptoms, history, tests results • Upload scanned files • Notification of clinical trials (via ClinicalTrials.gov) • Researchers • Search aggregate data • Download de-identified data • Administrator

  6. Project Status • Proposal approved by the TIDES Foundation Grant Awards Panel – Dec. 2009 • During 1st Half of 2010, needs requirement specification written. • Design specification completed and programming started June 2010. • Prototype by Oct 31st of this year.

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