Developing EHR systems coupled with growing patient demand to access their personal health information has helped spur the boom to develop personal health records (PHRs). “Project HealthDesign” is a Robert Wood Johnson Foundation funded project to extend applications and enhance the range of services now offered by existing PHRs.
A final report and work products are available from the initial phase of the project and to download go to www.projecthealthdesign.org. The team’s work captured key data from the work conducted by the first nine grantee teams as well as the team’s efforts to develop a common platform and explore the ethical, legal, and social issues tied to next-generation PHRs. The project is also releasing open sharable source code and other technical code documentation produced by the grantee teams.
Key findings from the report include:
- Traditional concepts of privacy and confidentiality are in many respects inadequate to capture the way health information can be shared and distributed
- Patients themselves have a large and unprecedented role in helping to safeguard their own health information
- Society’s response to demands for privacy, confidentiality protection, and best practices for information management must take into account the health aspirations and social and economic fears of patients
“Project Health Design” will continue to explore Observations of Daily Living (ODLs) through a second round of funding from the RWJF’s Pioneer Portfolio. Grantee teams selected for the next phase of the project will work closely with patients and providers to assess and test the potential of ODLs to help better manage chronic illnesses. Specifically, the teams will demonstrate how information from everyday life can be collected, interpreted, and integrated into the clinical care process.