Three years into the creation of the Patient-Centered Outcomes Research Institute (PCORI) under the Affordable Care Act, the Partnership to Improve Patient Care (PIPC) embarked on a mission to evaluate PCORI’s progress in meeting its statutory mandate to prioritize, conduct, and communicate comparative effectiveness research (CER) in ways that are patient-centered – or to quote PCORI, identify what it means to do “research done differently.” Our analysis, as outlined in a new white paper, focuses on a number of issues pertaining to PCORI including: patient centeredness, patient engagement, research methods, research priorities, advisory panels, research dissemination, evaluation, and funding.
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In light of PCORI’s mandate to conduct comparative clinical effectiveness research, CER communication tools and materials should present patients with sound, clinical evidence to help inform their individual decision-making process. Based on the focus on patient care management found in PCORI’s research agenda, is it clear that the communication of the results of that research will have a direct impact on individual patient decision-making. Therefore, as PCORI begins to play a more active role in CER communication, PIPC believes these proposed best practices represent elements for all CER organizations to consider when communicating CER results to physicians and patients. While this document reflects extensive research and engagement with the patient and provider communities, we also consider it to be a living document that will continue to evolve based on feedback we receive.
In the third biennial poll commissioned by PIPC in May of 2013, 1,500 registered voters expressed their opinion on a federal comparative effectiveness research institute. Poll results indicate that Americans believe that an independently-run CER Institute has great potential to benefit their lives by providing science-based, accurate, and transparent information to their doctors and the public at large. At the same time, Americans treasure their access to personalized, quality care and fear the potential misuse of information to make coverage decisions and limit their access to the best care. These poll results reinforce the mission of PIPC to help PCORI stay focused on its patient-centered mission, and to continue to emphasize the importance of transparency, good science, and a commitment to improving the communication of useful data to practitioners and individual patients alike.
On Monday, June 10, 2013, the Partnership to Improve Patient Care (PIPC) and the American Association of People with Disabilities (AAPD) convened a roundtable representing people with disabilities in an effort to provide PCORI with consensus recommendations to develop research contracts beneficial to the disability community. PCORI researchers were present to outline the parameters for the research projects that PCORI can fund, as well as the process for working with PCORI
Since the creation of PCORI, it has been clear to PIPC that it would be crucial for patients and physicians to work together in support of an agenda that is responsive to our shared needs at the point of treatment decision-making. To that end, PIPC supported a series of roundtables with leading physician and patient organizations beginning in early 2012 to identify, discuss, and define potential next steps in key areas of PCORI’s work. Leading medical societies that serve on PIPC’s Steering Committee – such as the American College of Cardiology and American Association of Neurological Surgeons – were instrumental in helping organize several of these roundtables
PCORI Meeting: December 5, 2012 - Methodology Workshop for Prioritizing Specific Research Topics12/5/2012
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