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The National Alliance for Mental Illness (NAMI)—a PIPC member—has submitted comments to PCORI on proposed guidelines for peer review of research findings. “As a patient advocacy organization, NAMI supports the work of PCORI to undertake patient-centered comparative effectiveness research that can better inform clinical care decision-making. NAMI is especially supportive of the efforts that the PCORI board and staff have made over the past few years to ensure meaningful patient engagement that drives the development of research priorities, the review of research findings and dissemination of results… NAMI supports the careful balance that PCORI has achieved with these standards for peer review. In the end, this peer review process will be critical in ensuring that PCORI funded research has the integrity and credibility that will be needed to be useful for patients and their providers.”
The Partnership to Improve Patient Care (PIPC) was joined by several hepatitis C patients and advocates today in sending a letter to the Patient-Centered Outcomes Research Institute (PCORI) applauding PCORI for convening stakeholders to prioritize potential hepatitis C research questions, while providing guidance on how to ensure the prioritized questions are truly patient-centered. The letter stated, "It was clearly articulated by patients and providers at the workshop that the most important patient-centered outcome in the case of hepatitis C is a cure for every patient diagnosed with this infectious disease. To be truly patient-centered, we feel strongly that PCORI’s prioritization process should capture the research questions that are best suited to help patients achieve this outcome - a cure for all patients.” PIPC and hepatitis C patients urged PCORI to give weight to the questions that were prioritized by patients, and to allow the public to comment on the draft priorities as is required by PCORI's statute.
This week, Chairman Coelho sent a letter to the Medicare Payment Advisory Commission (MedPAC) in response to a recent session. In September's public meeting, the Commission discussed developing payment policy based on the use of clinical evidence, with specific focus on reinstating the least costly alternative (LCA) policy to Medicare Part B drugs and biologicals.
Today, the Partnership to Improve Patient Care (PIPC) released a new White Paper on patient-centeredness in alternative payment models (APMs). This White Paper represents an important step in PIPC’s discussion of the application of comparative effectiveness research, and should serve as an important tool for policymakers in considering the future of value-based payment models
Today, the Partnership to Improve Patient Care (PIPC) submitted a letter to the Centers for Medicare and Medicaid Services (CMS) on how the agency can improve engagement of beneficiaries in health care to generate better care and better health at lower costs. The letter cites PIPC’s recent White Paper, which includes suggestions to promote the infrastructure for meaningful beneficiary engagement throughout the health care system and providing: (a) a voice for patients, (b) choice to patients, and (c) value for patients. Further, the comment letter enumerates targeted steps to address how patient engagement could be applied. Among the recommendations advanced in the letter: (1) CMMI should create a national advisory panel on patient-centeredness to give patients a voice in emerging alternative payment models (APMs); (2) CMMI should prioritize APMs that make patient engagement and informed treatment decision-making accessible; (3) and CMMI should improve upon and promote patient-centered models, such as Patient-Centered Medical Homes (PCMHs).
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PCORI Response to Recommendations from Roundtable on Accountability for Patient Engagement9/12/2014
In a letter to PIPC Chairman Tony Coelho, PCORI Executive Director Joe Selby stated, "PCORI appreciates the ongoing interest of both PIPC and Families USA in making certain that engagement and patient-centeredness are carefully evaluated and effectively implemented to improve relevance, quality and usefulness of healthcare research.” PCORI acknowledged it is moving toward a more targeted, stakeholder-driven agenda and portfolio, looking to improve topic solicitation activities, and acknowledged recommendations related to engagement of patient organizations.
On June 19, 2014, the Partnership to Improve Patient Care (PIPC) and Families USA co-hosted a roundtable discussion on “Accountability for Patient Engagement in Research and Dissemination.” The purpose was to move beyond a discussion of the points of engagement, and focus on who is accountable for patient engagement, and what makes engagement meaningful. It was noted, and agreed by participants, that a goal of patient engagement is real patient empowerment and activation in their health care. A focus of the discussion was implementation of the Patient-Centered Outcomes Research Institute (PCORI), which is creating a precedent for patient engagement practices in research that could be modeled by other entities.
Recently, the Partnership to Improve Patient Care (PIPC) submitted comments to Secretary Pritzker of the Commerce Department regarding the American Community Survey's Six disability Status Questions. The letter was led by PIPC and the Consortium for Citizens with Disabilities (CCD) and signed by 78 other organizations dedicated to supporting persons with disabilities.
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