On May 8, 2014, the Partnership to Improve Patient Care (PIPC) convened a Roundtable of experts in the diagnosis, treatment, and care of patients with hepatitis B (HBV) and C (HCV): i.e., patient advocates, health care providers (nurse practitioners, physician specialists including family physicians, gastroenterology, infectious disease, and oncology), representatives from the Department of Health and Human Services (HHS), and the Patient-Centered Outcomes Research Institute (PCORI), all of whom participated individually and/or on behalf of their representative organizations, to discuss current challenges to and potential solutions for the appropriate dissemination and implementation of clinical evidence. Additionally, this group focused on the value and clinical benefits of ensuring patients and providers have access to reliable, relevant, current data and information.
Today, the Partnership to Improve Patient Care (PIPC) submitted comments to the House Energy and Commerce Committee on the 21st Century Cures Initiative - an project aimed at accelerating the discovery, development, and delivery of innovative treatments for many diseases that do not currently have treatment options. As health care decision-makers increasingly are adopting comparative effectiveness research (CER)-based evidence and tools, PIPC has advocated for a delivery system that supports informed patient choice from a range of treatment options and explicitly recognizes and incentivizes innovation as an element of patient-centeredness
On March 7, 2014, the Partnership to Improve Patient Care (PIPC) convened a group of its Steering Committee members, along with individuals serving on the Patient-Centered Outcomes Research Institute (PCORI) Patient Engagement Advisory Panel (PEAP) and PCORI staff. The purpose of the roundtable was to discuss how PCORI should evaluate its activities against a patient-centered framework using metrics that are most useful to patients. PIPC Chairman Tony Coelho opened the meeting by emphasizing the importance of PCORI having a patient constituency, and the potential for PCORI’s evaluation framework to be a tool for organizing patients in support of PCORI’s patient-centered research model.
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.
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.
Today, the Patient-Centered Outcomes Research Institute’s (PCORI) Board of Governors (Board) met for their second meeting of the year. The agenda, which can be found here, included the first public presentation of PCORI’s Dashboard
Today, the Patient-Centered Outcomes Research Institute’s (PCORI) Board of Governors (the Board) met for their January meeting. The short agenda, which can be found here, considered for approval Patient Reported Outcomes Measurement Information System (PROMIS) funding.
The Board voted to approve $5 million to fund research that advances PROMIS within the patient centered framework of PCORI’s mission. The grants will consist of a maximum $500,000 for two years. 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.
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