ArticleResearch involvement and engagement2023
Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study.
Article in Research involvement and engagement, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 10 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
10 citing papers in PubMed, 11 citations in OpenAlex.
- Creating shared vision in patient partnered research: a case example of patient engagement from the PAVE project (producing an arthritis value framework with economic evidence: paving the way for rare childhood disease).Research involvement and engagement · 2026Article
- Evolving Roles for Patients as Partners in a National Kidney Health Research Network: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Integrating Structured Peer Support Pathways for Patients Undergoing Cellular Therapies: Insights from a Participatory Study.Current oncology (Toronto, Ont.) · 2025Article
- Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study.Journal of participatory medicine · 2025Article
- How to become partners. Ways to enhance the quality of patient and public involvement in healthcare research.Qualitative research in medicine & healthcare · 2025Article
- Article
- Developing a Quality Improvement Framework to Enhance the Health System User Experience for Individuals Living With Type 1 Diabetes: The Reshape T1D Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Through Their Eyes: Using Photovoice to Capture the Capacity-Building Journey of Long Covid Patient Experts.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Publisher Correction to: Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study.Research involvement and engagement · 2024Article
- Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers.Health research policy and systems · 2024Article
Corrections and comments
- Erratum issued
Authors and funding
8 authors at 6 institutions in 1 country.
Funding
Abstract
backgroundThe re-conceptualization of patients' and caregivers' roles in research from study participants to co-researchers ("patient partners") has led to growing pains within and outside the research community, such as how to effectively engage patients in research and as part of interdisciplinary teams. To support the growth of more successful research partnerships by developing a shared understanding of how patient partners conceptualize and contribute to their role, this study aimed to explore patient partners' motivations for engagement and understanding of their role.
methodsWe conducted semi-structured interviews with participants (n = 13) of an online survey of activities and impacts of patient engagement in Strategy for Patient-Oriented Research projects. Eligibility criteria included being a patient partner that indicated interest in interview participation upon survey completion, the ability to read/write in English and provide informed consent. Data were analyzed thematically using an inductive, codebook thematic analysis.
resultsIlluminating the lived/living patient and caregiver experience was central to how most patient partners conceptualized the role in terms of its definition, purpose, value, and responsibilities. Participants also identified four additional categories of motivations for becoming a patient partner and contributions that patient partners make to research that build upon and are in addition to sharing their lived/living experiences. Lastly, participants highlighted important connotations of the term patient partner, including temporal and context-specific considerations for the term "patient" and what "partner" may imply about the nature of the research relationship.
conclusionsAt the onset of partnership, academic researchers and patient partners must create the space necessary to discuss and understand each other's underlying motivations for partnering and their perspectives on the purpose, value, and responsibilities of the patient partner role. These early conversations should help unearth what research partners hope to get out of and feel that they are able to contribute to engaging, and in such contribute to the development of reciprocal relationships that work towards shared and valued goals. Trial registration Not applicable.
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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.