Our work in clinical informatics spans a wide range of problems in patient care and clinical research--from innovations in medical recordkeeping and diagnostic software for doctors to issues of research participants having a chance to benefit from their own data.
Although medical records have been computerized for decades, patients still have very little access to these records, and there is surprisingly little information-sharing between health care plans. As a result, medical decisions are often made with incomplete information. Together with the Clinical Decision Making Group at the MIT Laboratory for Computer Science, we have developed a secure, lifelong personally controlled health record (PCHR) system that turns control over to the patient: Indivo. The nationally recognized software platform is built to public standards and is made available as open-source code for wide adoption. Using this platform, Indivo has already developed and deployed PCHR systems in real-life settingsâ€”including our own MyChildren's portal--and has been adopted by others, such as Dossia, a consortium of major employers including Intel and Wal-Mart.
We are also leading a predictive medicine venture called Intelligent Histories. The vast amounts of longitudinal data accumulating in electronic health information systems present an untapped opportunity to improve medical screening and diagnosis. The Intelligent Histories project finds new ways of using this information, to predict people's future medical risks and help doctors choose preventive interventions. Recently, for instance, CHIP researchers have shown that "intelligent" medical histories can allow doctors to detect domestic abuse faster than traditional diagnostic methods.
In addition to these initiatives targeting patient care and diagnostics, we are keenly interested in improving clinical research. The newly-launched Gene Partnership program, involving collaborations across multiple departments at Children's, is a notable example. This program aims to find the root causes of common, complex genetic diseases, by combining clinical data with personal data from PCHRs in a large number of participants. The Gene Partnership will facilitate many new longitudinal and prospective studies that advance both basic and translational research, while offering participants the unique opportunity to partner with researchers, access research findings pertinent to their own health and receive personalized care.