Medical research would benefit greatly from massive, publicly shared sets of patient information.
Last month, 30 experts from various backgrounds convened by the Kauffman Foundation issued a report, "Valuing Health Care," that offered some familiar and some not-so-familiar recommendations for improving health-care outcomes and cost-effectiveness. Several of the lesser-known ones focused on how to best collect, aggregate, and share more and better patient health data.
The data at issue includes: patients' medical records, which are now typically held by multiple doctors and hospitals; information that only patients know (e.g., behaviors and life and job histories); genetic information that is only just becoming cheaply available; and health data generated by researchers, pharmaceutical companies, and insurers.
Although health data are highly sensitive and thus require protection, they are also a public good. The more data that researchers are able to analyze, the better chances they have for detecting patterns that can lead to fewer wasteful (and often painful) procedures and tests, and for finding new causes, treatments, and even cures for diseases.
Today, however, the best data analyzers tend to work for financial firms, Google, Facebook, and other high-tech companies, because that's where both the money and the data are. An imperative both for cutting costs and improving treatments in health care is to find creative ways to encourage individuals to divulge data about themselves on a depersonalized basis to databases that can be easily accessed by health care researchers. Once the data are available, they will attract the analytical talent much like honey attracts bees.
Ironically, patient medical records are of only limited value to researchers. Apart from lab and test results, which can be useful, physicians' notes are collected episodically and prepared largely with an eye toward getting paid. Making these records "electronic" won't change their fundamental nature. What researchers could most profit from are databases that link genetic information, medical histories, areas where patients have lived and worked, and how patients behave.