ArticleResearch involvement and engagement2022
Identifying potential barriers and solutions to patient partner compensation (payment) in research.
Article in Research involvement and engagement, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
35 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.Annals of the rheumatic diseases · 2024Pooled it
- Valuing student voices: a qualitative study on fair recognition and compensation practices for student partners in mental health research.Research involvement and engagement · 2026Article
- The Professional-Volunteer Paradox: Transforming Lived Experience into a Sense of Purpose in Dutch Oncology Patient Advocacy.The patient · 2026Article
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
- Compensating patient partners on health research teams: a qualitative descriptive study of barriers, facilitators, and implications for equity, diversity, and inclusion in Canadian patient-oriented research.Research involvement and engagement · 2026Article
- Tensions in patient involvement and engagement in health research and development: a qualitative interview study with key actors.Research involvement and engagement · 2026Article
- Building capacity for patient-engagement in neuromuscular disease research: A network project.Journal of neuromuscular diseases · 2026Article
- Patient Voices Leading Change: A Call to Action for Careful, Kind, and Connected Patient-Partnered Research in PCORnet®.Medical care · 2026Article
- 'Making little ethical decisions all the time': examining an ethical framework for consumer and community involvement in research, a co-produced ethnographic study.BMC medical ethics · 2025Article
- Patient and public involvement and engagement in methodology research: process, experiences, and recommendations from the SPIRIT- and CONSORT-Surrogate project.Research involvement and engagement · 2025Article
- Involving consumers in health research through the use of consumer panels: a scoping review.Research involvement and engagement · 2025Review
- Migrants Living in the United Kingdom and Their Perceptions of Participation in Health Research: A Mixed-Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Patient-oriented research- it's personal: two BC SUPPORT unit patient partners sharing their journey in patient-oriented research.Research involvement and engagement · 2025Article
- Consumers' Contribution to Health Research: Australian Research Organisations' Perspectives.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Article
- Advancing Research Alongside Patient Partners: Next-Generation Best Practices for Effective Collaboration in Health Research.Current oncology (Toronto, Ont.) · 2024Article
- Embedding patient engagement in the R&D process of a life sciences company through co-creation with a patient expert R&D board: a case study.Research involvement and engagement · 2024Article
- EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.Annals of the rheumatic diseases · 2024Article
- Patient engagement in a Canadian health research funding institute: implementation and impact.BMJ open · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Research that engages patients on the research team is often supported by grant funding from different organizations and, in some cases, principal investigators (who control the grant funding) provide patient partners with compensation (or payment) for their contributions. However, we have noted a gap in resources that identify and address barriers to compensating patient partners (no matter the size, degree or length of their engagement). In this paper, we present thoughts and experiences related to barriers to compensating patient partners with the goal of helping individuals identify and find solutions to these obstacles. Based on our experiences as individuals who live with chronic conditions and are patient partners, and those who are researchers who engage patient partners, we have identified eight barriers to compensating patient partners. We discuss each of these barriers: lack of awareness about patient partnership, institutional inflexibility, policy guidance from funders, compensation not prioritized in research budgets, leadership hesitancy to create a new system, culture of research teams, preconceived beliefs about the skills and abilities of patient partners, and expectations placed on patient partners. We demonstrate these barriers with real life examples and we offer some solutions. To further demonstrate these barriers, we ask readers to reflect on some scenarios that present realistic parallel situations to those that patient partners face. The intention is to illustrate, through empathy or putting yourself in someone else's shoes, how we might all do better with respect to institutional barriers related to patient partner compensation. Last, we issue a call to action to share resources and identify actions to overcome these barriers from which we will create an online resource repository.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.