Krumholz: “I think maybe we have a chance to turn the world upside down just a bit”
The Patient-Centered Outcomes Research Institute’s mission is to fund health research that offers patients and caregivers the information they need to make medical decisions. The PCORI Board of Governors has adopted the following working definition of “patient-centered outcomes research.”
Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options. This research answers patient-centered questions such as:
- “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”
- “What are my options and what are the potential benefits and harms of those options?”
- “What can I do to improve the outcomes that are most important to me?”
- “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and healthcare?”
To answer these questions, PCOR:
- Assesses the benefits and harms of preventive, diagnostic, therapeutic, palliative, 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, availability of services, technology, and personnel, and other stakeholder perspectives.
Listen to this inspirational speech by PCORI Board of Governors member Harlan Krumholz, at the PCORI National Patient and Stakeholder Dialogue, February 27, 2012:
Addendum: see also these posts by Josh Freeman and Richard Lehman and articles in the April 18, 2012 issue of JAMA.