Comparative Effectiveness Research

Since its founding, the Partnership to Improve Patient Care (PIPC) has been at the forefront of patient-centeredness in comparative effectiveness research (CER) – both its generation at the Patient-Centered Outcomes Research Institute (PCORI), and its translation into patient care. Having driven the concept of patient-centeredness in the conduct of research, PIPC looks forward to bringing the patient voice to the discussion of how to advance patient-centered principles throughout an evolving health care system.

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Goals for PCORI

PIPC was created to ensure that principles of patient-centeredness were integrated into publicly-supported comparative effectiveness research (CER). In the implementation of PCORI, created by Congress in 2010, we have strongly advocated that the institute recognize its ultimate beneficiary, the patient, in everything that it does:

• PIPC advocates that PCORI embrace the expertise of specific patient and provider communities to identify research priorities, to be partners in research, and to develop dissemination strategies for research relevant to their needs.
• PIPC urges PCORI to establish meaningful, specific national research priorities, and to follow its authorizing statute’s guidance in contracting with researchers to conduct specific research projects, rather than allowing researchers to drive the research agenda.
• PIPC urges PCORI to create expert advisory panels that have a depth of expertise on the specific national priority topics to ensure that the resulting research is useful to patients and their providers.
• PIPC advocates for PCORI’s Methodology Committee to focus its work on the activities mandated by its authorizing statute, to develop methodological standards for research and a translation table.
• PIPC supports PCORI’s continued efforts to develop improved strategies for dissemination and communication of research findings, in consultation with patients, providers and other stakeholders.
• PIPC supports PCORI’s efforts to adopt an evaluation model that looks critically at the impact of PCORI’s stakeholder engagement and other activities on its mission to be truly patient-centered, as well as criteria for self-evaluation.

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No Patient is 'Average'

While comparative effectiveness research (CER) can play a positive role in improving patient care and health care delivery, it also can be misapplied in ways that unintentionally undermine patient access to care and physician-patient decision-making. That's because CER results typically are based on broad population averages that don't reflect the differences in needs of individual patients. Any research results need to be considered along with the broader body of evidence, the patient's individual needs and preferences, and the physician's clinical expertise. Therefore, Congress directed PCORI to conduct comparative clinical effectiveness research in a manner that does not promote misuse of study results to impose blunt, "one-size-fits-all" access restrictions.
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PIPC will remain vigilant in its work to ensure that research is implemented in a manner that empowers patients in their own healthcare, and protects the ability of providers to deliver treatments that are best suited to their individual patients.