Advancing Research by Giving Patients Greater Access to Their Health Data

Read more about Joe Selby and Sharon Terry’s participation in the Precision Medicine Initiative or PMI in a recent PCORI blog. PMI seeks to gather a range of health information—including genetic data, bio-specimens, clinical records, and information reported by patients themselves—from more than 1 million people. Its goal is to create a research resource that can help develop treatments tailored to individual patients.

PCORnet believes that research must be informed by the everyday experiences of ordinary patients, so it addresses the questions that matter most to patients and the results are useful and widely applicable. As chair of the PCORnet Engagement Committee, Sharon is leading the PCORnet Building Trustworthiness in PCORnet workshop, March 28-29 in Washington, DC. This is an opportunity that will bring together patients, caregivers, clinicians, industry, advocacy groups, the research community, and the broader public at large to begin a critical dialogue about ethics, trust, and engagement, not just for PCORnet, but for clinical research overall. Watch Sharon’s video to learn more about PCORnet’s trustworthiness meeting.