On November 21, 2013 the Partnership to Improve Patient Care (PIPC) and the American Academy of Neurology (AAN) jointly hosted a Movement Disorders focused Roundtable on issues specific to the dissemination and implementation agenda of the Patient-Centered Outcomes Research Institute (PCORI). A PCORI representative briefed attending participants (those signing onto this summary and recommendations listed in “Appendix A”) on the Institute’s current thinking and approaches related to its Dissemination and Implementation Action Plan, and participants were offered the opportunity to both comment and ask questions. Subsequently, participants engaged in a wide ranging discussion intended to surface and identify consensus recommendations for both PCORI and the AAN. A summary of the Roundtable and recommendations are available below.
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On November 6, 2013 the Partnership to Improve Patient Care (PIPC) and the American Gastroenterological Association (AGA) convened a Roundtable Discussion of patient advocacy and provider organizations to discuss the development of a Dissemination and Implementation Action Plan by the Patient Centered Outcomes Research Institute (PCORI). The goal of the Roundtable was to identify and articulate consensus recommendations to guide PCORI as it initiates this next phase of its research agenda.
The issue of how to set priorities for comparative research and health technology assessment has long been recognized as an important one. The statute creating the Patient-Centered Outcomes Research Institute (PCORI) also recognized this, describing specific factors and procedural considerations for defining national priorities for research. The question of how best to define research priorities, and whether to do so by proactively identifying specific topics or issuing broader solicitations for investigator-initiated prioritization, has been an area of ongoing debate.
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.
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
PIPC submitted comments in response to the Patient-Centered Outcomes Research Institute’s Draft Methodology Report. In the comments PIPC Chairman Tony Coelho expressed concerns that the recommendations the Methodology Committee received in developing the report did not include a diverse representation from the perspectives of patients, people with disabilities, and their physicians and caregivers and that the report lacked transparency. Chairman Coelho urged the Methodology Committee to reach out to a broad range of stakeholders to create a more patient-centered approach to comparative effectiveness research.
The Partnership to Improve Patient Care (PIPC) recently commented on AHRQ’s Draft Methods Future Research Needs Report entitled “Engaging Stakeholders To Identify and Prioritize Future Research Needs.” In the comments, PIPC expresses appreciation of the report’s effort to determine the extent to which stakeholders are consulted to identify and prioritize future research needs, and urges AHRQ to recognize patients as stakeholders in their own right in a final report. PIPC also urges AHRQ to recognize that patients are different than consumers, and that patient views, experiences and needs are very district from a consumer.
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