NAMI joined PIPC because we, too, believe strongly in the promise of comparative clinical effectiveness research to improve quality and outcomes in health care. Through our membership in PIPC, NAMI endorsed a set of principles that we believe can help ensure that comparative effectiveness meets its full potential and does not become a blunt instrument that limits patient choice and results in cost becoming the dominant factor in guiding treatment decisions. Among these principles for ensuring that comparative effectiveness research is patient-centered:
Defining CER as a tool to improve patient care;Focusing on communicating research results to the public, not making centralized coverage and payment decisions;Providing information on clinical value and patient health outcomes, not cost effectiveness assessments;Recognizing the diversity, including racial and ethnic diversity, of patient populations and communicating results in ways that reflect the differences in individual patient needs;Examining all aspects of health care – including medical interventions, care management, benefit design, and processes of care – that can improve care quality and reduce health care disparities; andRequiring open and transparent processes where all stakeholders have equal voice in governance and input into research priorities.
NAMI was proud to advocate for Congress to create the Patient-Centered Outcomes Research Institute (PCORI) that met these principles. Since its creation in 2010, PCORI recently began funding research, and continues to develop its processes for engaging stakeholders in the development of its research priorities and research agenda. By staying focused on the patient, PCORI can successfully demonstrate improved clinical outcomes by “research done differently.”