PSC Research Network

A Collaborative Application with Google Health

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

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

4T. Hill, PSC - Google Project, Jan. 2010

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

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

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.