Data for Individual Health

Today, the delivery of health care moves in a linear fashion: starting from preventive medicine, to diagnosis, to treatment, and ultimately to outcomes. While this process is informed by clinical research, there is an inadequate feedback loop between health care outcomes and clinical research, reducing opportunities for further learning in this system. Additionally, population health research and community engagement are not adequately connected. A “Learning Health System” would connect the medical system with broader societal inputs, creating important links between health and wellness and health care. This concept highlights natural roles for electronic health records (EHRs) and personal health records, but also points to a level of data access, integration, and scalability that goes well beyond the interoperability of EHR systems.

The Agency for Healthcare Research and Quality and the Robert Wood Johnson Foundation co-funded JASON, at The MITRE Corporation, to conduct a review of these issues.

This project addressed the following questions:

• How can EHRs highlight opportunities to engage individuals as they try to achieve health, and to learn from failed efforts to improve treatments for individuals?
• How would an EHR of the future help a care team whose goal was health rather than health care, and who, along with the individual, have access to all the data?
• How can data analytics be used to support high-quality, patient-centered care and offload the large requirements of processing?

The project developed a report that summarized key findings and recommendations to achieving a national-scale “Learning Health System” for identifying and sharing effective practices of care.