“As PCORI begins its work, we hope this paper proves useful in defining CER procedures grounded in the principles of stakeholder involvement, openness and transparency, public participation, and open decision-making,” PIPC Chairman Tony Coelho said. “PCORI represents a significant new opportunity for supporting patients and providers with research that is sensitive to their differences and responsive to their needs. Defining strong procedures for operations and governance is an important initial step in realizing this opportunity.”
Among the important issues discussed in the paper are the procedures the PCORI Board of Governors will put in place to provide transparency, participation, and public record or their meetings and decisions, the length of public comment periods, and the procedures established on important decisions like setting a research agenda.
“As some areas of this new model have yet to be fully fleshed out, this paper is a valuable resource to identify potential best practices,” Mr. Coelho said.
PIPC also recently launched a CER database, which provides a single, comprehensive, easy-to-use inventory of CER projects. These include CER studies currently being funded by agencies within the U.S. Department of Health and Human Services (HHS) under the American Recovery and Reinvestment Act and other CER studies being funded by the federal government. The database can be accessed directly at www.cerinventory.org.
The Partnership to Improve Patient Care was formed in November 2008 to support proposals to expand the government’s role in comparative effectiveness research that are centered on patient and provider needs; raise awareness about the value of well-designed CER; and promote the important role of continued medical innovation as part of the solution to cost and quality challenges in health care. Partnership members include a wide range of health care organizations representing patient, provider and industry advocacy groups.
To learn more about PIPC, visit PIPCpatients.org.