Table 1.

Published definitions of patient-centered outcomes research and related concepts

Organization	Definition
Patient-centered Outcomes Research Institute (United States)	“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… PCOR: 1) assesses the benefits and harms of preventive, diagnostic, therapeutic, palliative, or health delivery systems interventions to inform decision making, highlighting comparisons and outcomes that matter to people; 2) 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; 3) incorporates a wide variety of settings and diversity of participants to address individual differences and barriers to implementation and dissemination; and 4) investigates (or may investigate) optimizing outcomes while addressing burden to individuals, availability of services, technology, and personnel, and other stakeholders perspectives” (38)
Agency for Healthcare Research and Quality (United States)	“PCOR is comparative clinical effectiveness research on the impact on health outcomes of two or more preventative, diagnostic, treatment, or health care delivery approaches” [adapted from Section 6301(a) of the Patient Protection and Affordable Care Act of 2010] (39)
Canadian Institutes of Health Research	“Patient-oriented research refers to a continuum of research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve health care systems and practices” (40)
National Health Service, National Institute for Health Research, INVOLVE Coordinating Center (UK)	“…public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritize research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants. When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from organizations that represent people who use services” (11)
National Health and Medical Research Council and Consumers Health Forum of Australia	“…opportunities to engage consumers and community members will depend on the type of research being undertaken…Consumers and community members can be, and are, involved at various levels of research activity and the institutions in which research is conducted. ‘Levels of research activity’ include planning, seeking funding, conducting the research, and communicating the outcomes. Consumers and community members should advise research institutions and researchers on their consumer and community perspectives and lived experiences …” (10)