In addition to Coelho, Angela Ostrom, Director of Federal Relations for the National Epilepsy Foundation and a member of PIPC’s Steering Committee, spoke on behalf of PIPC. Ostrom described the importance of how individuals with epilepsy must work closely with their physician to optimize their treatment.
“We understand that there are often obstacles and difficulties in achieving CER that recognizes unique patient needs and encourages individualized treatment, particularly for small sub-populations within chronic disease and disability populations. PCORI has an opportunity here to incorporate into its structure and mission a CER process that advances a research agenda responsive to these concerns. Doing so starts with the definition of ‘patient centered outcomes research’ and requires that patients, caregivers and providers can fully participate in the process.”
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.