ArticleCitizen science : theory and practice2019
Patients as research partners; how to value their perceptions, contribution and labor?
Article in Citizen science : theory and practice, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers.
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
37 citing papers in PubMed.
- Effect of invitation letter in language of origin on screening attendance: randomised controlled trial in BreastScreen Norway.BMJ (Clinical research ed.) · 2023Trial
- Giving credit where credit's due - recognition of patient partners in health research.Research involvement and engagement · 2026Article
- Recognition, remuneration and reimbursement of patient and public involvement partners in pragmatic randomised controlled trials. A survey of author practices.Research involvement and engagement · 2025Article
- The perspectives of people with lived experience, families, and researchers with the manuscript writing process in mental health and substance use research: a qualitative study.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
- A Qualitative Study of the Ethics of Community Scientists' Role in Environmental Health Research from the Perspective of Community Scientists and Institutional Review Board Staff.Environmental health perspectives · 2025Article
- Supporting consumer engagement in health research about chronic conditions: a scoping review of evidence-based resources.Research involvement and engagement · 2025Review
- Reported community engagement in health equity research published in high-impact medical journals: a scoping review.BMJ open · 2024Article
- What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Recommendations for successful involvement of patient partners in complex intervention research: a collaborative learning process.Research involvement and engagement · 2024Article
- Implementing the patient partnership approach to quality improvement of care and services: A multiple case study protocol.PloS one · 2024Article
- Comment on "Reflections on patient engagement by patient partners: How it can go wrong".Research involvement and engagement · 2023Article
- Evaluating the impact of engaging older adults and service providers as research partners in the co-design of a community mobility-promoting program: a mixed methods developmental evaluation study.Research involvement and engagement · 2023Article
- Harnessing citizen science in health promotion: perspectives of policy and practice stakeholders in Australia.Health promotion international · 2023Article
- Openness in Scientific Research: A Historical and Philosophical Perspective.Journal of open access to law · 2023Article
- Recognizing patient partner contributions to health research: a systematic review of reported practices.Research involvement and engagement · 2023Review
- Partnering with patients and caregivers to enrich research and care in kidney disease: values and strategies.Clinical kidney journal · 2023Review
- Developing a core set of patient-reported outcomes and patient-reported experience measures for peritoneal surface malignancies (COMETE).The British journal of surgery · 2023Article
- Working together in health research: a mixed-methods patient engagement evaluation.Research involvement and engagement · 2023Article
- 'Learning and growing together': exploring consumer partnerships in a PhD, an ethnographic study.Research involvement and engagement · 2023Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
Citizen Science refers to the consultation, participation, engagement or involvement of the general public in research. Rationales for this interaction include increased public access and involvement of citizens in research, immersion of community values relevant to research, outreach and educational potential with the public, and ultimately, the democratization of science. This paper focuses on the specific subset of citizen science that seeks to engage "patient partners" in health research to gain the valuable experiential knowledge of those living with a disease. Greater patient engagement in research (PER) can provide researchers with insights about citizen values and needs relevant to determining research priorities, methodology, applications and ethical parameters; this would ideally lead to more effective real-world applications. Over the last decade, projects involving patients partners in research (PPR) have varied from mere tokenism and undervaluation to full involvement and empowerment of patient participants - the former, a subject of criticism, and the latter, promoted as an ideal. In this article, we will argue that the value of that experiential knowledge from patient partners in research should not only be acknowledged through its ongoing use, but also through recognition of participants who contribute to the creation and application of new knowledge. We will explore types of recognition that might be attributed to PPR, including scientific recognition; financial recognition or reward; personal and altruistic recognition; and the benefial outcomes of research applications. We will also consider whether such types of recognition could be applied to the broader field of citizen science.
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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.