Driving Accountability for Value in Medicine: Leveraging PCORI through Reauthorization​

Patients and persons with disabilities are increasingly concerned about whether they can afford the tests and treatments they need. As stated by the Partnership to Improve Patient Care (PIPC) in 2010, comparative effectiveness research can form the foundation for meeting “the critically important challenge of controlling health care costs while avoiding oversimplified rationing of patient care.” Now more than ever, we need solutions that are both evidence-based and patient-centered.
 
The Patient-Centered Outcomes Research Institute (PCORI) offers important infrastructure to meet this challenge. With key reforms included with its FY2019 reauthorization, PCORI’s work can be focused to ensure its research is timely and responsive to the needs of those making decisions about new drugs and other treatment options, and that its research findings are more readily available to decision-makers. 
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Primer: PCORI Background, Funding Streams, and Reauthorization 

​The Patient-Centered Outcomes Research Institute (PCORI) was created in 2010 to establish priorities and set an agenda for the conduct of comparative clinical effectiveness research (CER). The Government Accountability Office (GAO) concluded in a March 2015 report that PCORI is fulfilling its Congressional mandate to generate evidence that patients and those who care for them can use to make better-informed healthcare decisions. PCORI invested nearly $1.4 billion in more than 500 patient-centered CER studies and related projects that support CER to date. 

Click here to read more about PCORI, including why the institute matters, how it's funded, and reauthorization in 2019. 

For more information and fact sheets about PCORI-funded research, click here.

Principles of Patient-Centeredness in Research

In order to put patients and providers first, comparative clinical effectiveness research must:
  • Feed into shared decision-making tools to improve patient care;
  • Enhance information accessible to patients about treatment options and about how to close the gap between care known to be effective and the care patients receive;
  • Focus on communicating research results to patients, providers and other decision-makers, not making centralized coverage and payment decisions or recommendations;
  • Provide information on clinical value and patient health outcomes, not cost-effectiveness assessments;
  • Design studies that reflect the diversity, including racial and ethnic diversity, of patient populations and communicate results in ways that reflect the differences in individual patient needs;
  • Assure that studies are technically excellent and appropriate;
  • Require open and transparent processes where all stakeholders have input into the specific research priority topics and the designs of the studies;
  • Examine all aspects of health care including care management, medical interventions, benefit design, and processes of care for all patients;
  • Support continued medical advances, including personalized medicine and other advances that can help improve patient care and control health care costs;
  • Recognize the unique nature and value of targeted therapies that benefit specific groups of patients with rare and orphan diseases.
  • Click here to print. 
Where We stand

PCORI Contracts by State 
To learn more about PCORI's work, the research they fund, and their programs and initiatives, click here. 

PIPC and Families USA Roundtable

On June 19, 2014, 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.