The Partnership to Improve Patient Care (PIPC)—whose members include organizations representing patients, people with disabilities and other stakeholders—today released a public opinion poll regarding healthcare delivery and access in America. The survey, which builds on prior surveys conducted by PIPC in 2013 and 2015, shows that of nearly 2,000 registered voters polled by Morning Consult, 8 in 10 say that doctors and patients should be able to decide the best course of treatment without government interference and that Medicare reforms should move toward patient-centered health care by giving physicians and patients the support they need to choose the best care for them
The Partnership to Improve Patient Care (PIPC) and the Cancer Support Community (CSC) convened a roundtable on July 8, 2015 on “Patient-Driven Health Care and Evidence in Oncology: Setting an Agenda.” The roundtable participants represented patient organizations serving cancer patients, as well as a representative from the Patient-Centered Outcomes Research Institute (PCORI). Roundtable participants discussed the outcomes that matter to oncology patients and policies that would support high-quality, patient-driven cancer care.
The Partnership to Improve Patient Care (PIPC) today released a public opinion poll regarding healthcare in America, indicating that Americans are interested in actively participating in treatment decision making, and want the government to have a limited say in what treatments they can access. The survey, which polled 1,500 registered voters, updates a survey originally conducted in 2013.
These materials are intended to help the Patient-Centered Outcomes Research Institute (PCORI) and its partners as they develop plans for the dissemination and implementation of health care evidence. To what extent are these materials helpful in meeting this goal?
What would make them more useful?
PIPC would reiterate many of the concerns highlighted during the webinar on December 10, 2014, including the need for simplification of the toolkit, and its application to different audiences.
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.
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.
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.
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.