Patient-Oriented Research and Community-Based Health Research

Patient-oriented research "refers to a continuum of research that engages patients as partners, focusses on patient-identified priorities and improves patient outcomes." (CIHR Strategy for Patient-Oriented Research)

Community-based research is an "approach that involves active participation of stakeholders, those whose lives are affected by the issue being studied, in all phases of research for the purpose of producing useful results to make positive changes." (Nelson, Ochocka, Griffin and Lord, 1998, quoted by Community-Based Research Canada) 

Both terms address meaningful engagement of the public in research, beyond simple consultation; doing research with people rather than for or to people. Increasingly, granting agencies require public or patient involvement on funded projects. 

A wide range of language is used to describe various aspects of public involvement in research or service delivery. Besides patient-oriented research (POR) and community-based research (CBR/CBPR), you may encounter these terms:

• Ladder of participation / spectrum of engagement: these scales depict levels at which the public may be included in research.
• Participatory research / action research
• Citizen science
• Knowledge translation / knowledge mobilization: these terms describe communication of research results back to participants or communities, and putting research findings into practice in meaningful ways.
• Coproduction / codesign / coresearch
• PPI or patient and public involvement 

A variety of terms may describe patients or the public, including:

• consumers
• lay people
• service users
• families, caregivers or carers
• people with or people living with a health condition
• peers or peer researchers
• people with lived experience or experts by experience
• stakeholders*

*While "stakeholder" is a commonly used term in health research, it has negative connotations to many Indigenous peoples:

https://www2.gov.bc.ca/gov/content/governments/services-for-government/service-experience-digital-delivery/web-content-development-guides/web-style-guide/writing-guide-for-indigenous-content/terminology#word-choice

This article offers a helpful overview of common terms in use:

Islam, S., Small, N. An annotated and critical glossary of the terminology of inclusion in healthcare and health research. Res Involv Engagem 6, 14 (2020). https://doi.org/10.1186/s40900-020-00186-6