According to PIPC Chairman Tony Coelho, “We all know that changing the culture of research is not easy. It requires a long-term commitment and strong stakeholder engagement. PCORI must continue working to ensure all stakeholders, particularly patients and providers, can contribute in every step of the research process.” He continued, “As this White Paper makes clear, we encourage PCORI to embrace the expertise of specific patient and provider communities to identify research priorities, to be partners in research, and to develop dissemination strategies for research relevant to their needs.”
The White Paper also suggested, among other things, that PCORI should create stronger mechanisms for researchers to pursue research topics that patients and providers identify as useful to their health care decision-making. Further, the analysis concluded that PCORI should establish meaningful, specific national research priorities, and “enter into contracts for the management of funding and conduct of research” per its authorizing statute, in order to shift away from the investigator-initiated research model.
Coelho also pointed out that an area of continuing need is the development of improved strategies for dissemination and communication of research so that findings are comprehensible and useful for patients and providers at the point of care. Coelho stated, “We have great hope for the future of PCORI and patient-centered outcomes research, but unless this research ultimately reaches and helps patients, it will never achieve its true promise.” PIPC recently released “best practices” for CER communication to ensure research findings are dissemination in a manner that improves patient and provider decision-making.
PIPC's Steering Committee is comprised of the following organizations: The Alliance for Aging Research, the American Association of People with Disabilities, the American Association of Neurological Surgeons, the American Gastroenterological Association, the American Osteopathic Association, the Association of Clinical Research Organizations, BIO, Easter Seals, the Epilepsy Foundation, the National Association for Hispanic Health, the National Alliance on Mental Illness, PhRMA, and the American Association for Cancer Research. PIPC can also be followed on Facebook and Twitter at @pipcpatients.