The Patient-Centered Outcomes Research Institute, or PCORI, is requesting public feedback on its working definition of patient-centered outcomes research and the initial eight research topics the institute has identified for funding through competitive grants.
The PCORI, which is an independent, nonprofit research organization created by Congress as part of the Patient Protection and Affordable Care Act (PPACA), aims to help patients, payers, physicians and other stakeholders make medical decisions by providing them with evidence-based research.
The institute is seeking input on the following working definition of patient-centered outcomes research: “Patient-centered outcomes research helps people make informed health care decisions and allows their voice to be heard in assessing the value of health care options. This research answers patient-focused questions:
- ‘Given my personal characteristics, conditions and preferences, what should I expect will happen to me?’
- ‘What are my options and what are the benefits and harms of those options?’
- ‘What can I do to improve the outcomes that are most important to me?’
- ‘How can the health care system improve my chances of achieving the outcomes I prefer?’
To answer these questions, (patient-centered outcomes research):
- assesses the benefits and harms of preventive, diagnostic, therapeutic, or health delivery system interventions to inform decision-making, highlighting comparisons and outcomes that matter to people;
- is inclusive of an individual’s preferences, autonomy and needs, focusing on outcomes that people notice and care about, such as survival, function, symptoms, and health-related quality of life;
- incorporates a wide variety of settings and diversity of participants to address individual differences and barriers to implementation and dissemination; and
- investigates (or may investigate) optimizing outcomes while addressing burden to individuals, resources, and other stakeholder perspectives.”
Individuals and organizations are invited to provide feedback on the definition for patient-centered outcomes research through the PCORI’s website by Sept. 2.
The institute also is seeking public comment on eight research topics — including developing methods for translating research findings into changes in health care practices and identifying gaps in evidence that most affect vulnerable populations — that have been identified for the institute’s first round of competitive grants. That public comment period ends Aug. 31.
Commenters are not required to provide any personal identifying information to offer their input. They may, however, provide this information if they are willing to be contacted with questions about their comments.
According to the PCORI website, the institute plans to issue a request for applications in late September for a series of grants for pilot projects that will assist the institute in establishing national priorities for research.