At the Forum, PIPC also released a White Paper (Executive Summary: here) outlining a “Road Map for Prioritizing Research” which called upon PCORI to implement changes in the culture of research, through an open and transparent process, in order to meet its mandate to conduct patient-centered comparative clinical effectiveness research.
To help PCORI achieve this goal, PIPC has developed a priority-setting “road map” that:
- Calls on PCORI to establish a targeted research agenda based on a broad and structured solicitation of topics from patients and providers;
- Directs PCORI staff to evaluate and distill the suggested research topics to ensure research topics meet PCORI’s mandate of patient-centeredness and the statutory criteria for research;
- Develops a rationale and topic brief for research topics to provide both the PCORI board and the public with a clear and transparent understanding of PCORI’s research agenda;
- Utilizes the relevant clinical expertise (both within and beyond PCORI’s advisory panels) to help rank the topic list
- Ensures the opportunity for public comment on the draft priority list and research agenda;
- Provides for input and approval by Board of Governors; and
- Promotes transparency of the priority-setting process in its entirety.
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.