What is Patient-Centered Outcomes Research?
Compared to traditional research, patient-centered outcomes research (PCOR) often involves patients, caregivers and other non-researcher stakeholders in unique ways. PCOR focuses on answering patients’ and caregivers’ questions about the results and issues of greatest concern to them.
PCOR is based on the belief that patients have unique perspectives that can change and improve health care and requires that patients and other stakeholders participate at every stage of the research process, from the selection of the questions to be studied to the sharing of results.
According to the Patient-Centered Outcomes Research Institute (PCORI), PCOR helps patients and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options. PCOR 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 health care?
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.
- Investigates (or may investigate) optimizing outcomes while addressing burden to individuals, availability of services, technology and personnel, as well as other stakeholder perspectives.
PCORI’s Research Fundamentals
People new to health research or patient-centered research have many questions: What is patient-centered outcomes research? How does the research process work? How can I be an effective partner on a research study?
PCORI’s on-demand training package, Research Fundamentals, answers those questions and more. It is designed to help people understand the language and logic of the research process in an engaging and easy-to-grasp way.