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.