Dollars, disease, and democracy: Has the Director's Council of Public Representatives improved the National Institutes of Health?

Abstract

The National Institutes of Health (NIH) Director's Council of Public Representatives (COPR) was established in 1998 as an advisory council to the NIH director and NIH's only wholly “public” advisory group. COPR's stated objective was, and remains, to strengthen and formalize public input into funding-allocation decisions for biomedical research by the NIH, the single largest sponsor of such research. Yet, to date, COPR's work and effectiveness have not been carefully explored. In beginning to fill this void, my goal is to contribute to the understanding of public involvement in the distribution of health research dollars. More specifically, I show that COPR has failed to promote public participation in the apportionment of biomedical research funds, but that it has been beneficially effective in some respects and likely could — and arguably should — be made more effective. The essay draws on interviews I conducted with former COPR members and discussions I initiated with executive branch employees familiar with COPR's mission, opportunities, impediments, and performance.