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AAMC Submits Comments about PCORI’s Proposed National Priorities for Health

August 27, 2021

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CONTACTS
Anne Berry, Lead Specialist, Implementation Research & Policy

The AAMC submitted comments to the Patient-Centered Outcomes Research Institute about the Institute’s Proposed National Priorities for Health. PCORI’s five proposed priorities are: Increase evidence for existing interventions and emerging innovations in health; enhance infrastructure to accelerate patient-centered outcomes research; advance the science of dissemination, implementation, and health communication; achieve health equity; and accelerate progress toward an integrated learning health system.

The AAMC supports PCORI’s strategic planning process and the development of these priorities to inform PCORI’s research agenda, and provided the following feedback:

  • The AAMC agrees there is a need to study both existing treatments and emerging innovations. However, for existing treatments, the AAMC encourages PCORI to focus particular attention on those interventions that have lingering questions about their utility, where there is a meaningful potential for the research to identify a need to change existing practices.
  • As innovations can potentially introduce undue burdens and increase disparities in health care, emphasizing the importance of understanding and studying the benefits and risks for adopting new practices is critical. Additionally, as PCORI has identified, there is a need to ensure that these studies include populations from diverse backgrounds, specifically those who have been traditionally underrepresented in medical research.
  • The AAMC urges PCORI to continue to support and build upon the success of PCORnet and recommends further collaboration with federal health agencies and key stakeholders to gain consensus for how to harmonize common data models and enhance health data infrastructure.
  • The AAMC urges PCORI to ensure that the data sharing requirements for its grantees are aligned with those issued by other granting agencies and are supported through: funding mechanisms that recognize the costs of meaningful data sharing; clear and transparent criteria for evaluating the sufficiency of grantees’ efforts; encouragement and identification of databases that follow the FAIR principles; and the use of persistent identifiers to allow researcher to track the reuse of and receive credit for their data.
  • PCORI’s dissemination and implementation awards help to make research findings actionable. Emphasizing the importance of this concept in PCORI’s future research agenda will help bridge the gap between evidence generation and uptake.
  • The AAMC supports PCORI’s approach that ensures PCORI-funded research takes into account systematic, avoidable, and unjust differences in health between patient populations, and emphasizes the inclusion and deep engagement of participants from groups that have been and continue to be marginalized in research and medical care. The AAMC encourages PCORI to ensure that patients, families, and communities are engaged as codevelopers across all aspects of the research process. To facilitate this engagement requires that our research and medical care organizations demonstrate they are worthy of trust. The AAMC encourages PCORI and its grantees to explore and utilize the AAMC Center for Health Justice’s Principles of Trustworthiness toolkit to build that necessary foundation.
  • Given the understanding that population and community health inequities are largely driven by factors beyond the purview of medical care, the AAMC strongly urges PCORI to reconsider its focus on “health equity” and instead set its sights on achieving “health care equity.” Considering health care equity, specifically, in all future research activities is of critical importance to ensure that the medical care and biomedical research systems focus their efforts on aspects of health that are almost exclusively under their control: equitable access to medical care services and equitable quality of medical care processes and outcomes. These should be the targets of PCORI-funded, health care equity-focused science.
  • The AAMC recommends that PCORI work with federal agencies and other stakeholders to develop a standardized, national, sociodemographic data collection system to assist with not only the documentation of inequities but also, and more importantly, the identification of potential policy- and practice-based solutions to those inequities.
  • The AAMC recommends that PCORI consider mechanisms for funding research that requires collaborative work across health systems to gain insight into methods and strategies for successful coordination.
  • Finally, the AAMC values PCORI’s commitment to providing training, educational support, and research opportunities (in collaboration with the Agency for Healthcare Research and Quality) to patient-centered outcomes researchers working within learning health systems. The AAMC supports enhancing these funding opportunities and hope to see PCORI identify addition ways to support researchers and trainees in academic health settings.

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