ArticleJournal of patient experience2020
The Dimensions of Tokenism in Patient and Family Engagement: A Concept Analysis of the Literature.
Article in Journal of patient experience, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers, 2 of them syntheses 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
38 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pooled it
- Does patient and public involvement influence the development of competency frameworks for the health professions? A systematic review.Frontiers in medicine · 2022Pooled it
- Evaluating Meaningful Patient and Public Involvement in Intensive Care Research-A PEIRS-22 Survey.Nursing in critical care · 2026Article
- EXCEL-Punjabi: the process of using a community based participatory research approach for a culturally-tailored exercise oncology intervention.Research involvement and engagement · 2026Article
- How We Embedded Consumer Engagement Into Workplace Education and Continuing Professional Development: A Quality Improvement Initiative in a Tertiary Imaging Department.Journal of medical radiation sciences · 2026Article
- Meaningful or Marginal: An Integrative Review of Consumer and Community Involvement in Migrant Health Research.Healthcare (Basel, Switzerland) · 2026Review
- Evaluation of the Implementation and Contribution of Patient Partners on a Steering Committee at a University Hospital in the Province of Québec, Canada.Healthcare (Basel, Switzerland) · 2026Article
- Using Partner-Driven Maximum Variance Sampling to Form a Lived Experience Panel: Step-by-Step Tutorial.Journal of participatory medicine · 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
- Real-Time Cardiac Biofeedback Intervention: Experiences of Patient and Public Involvement in a Randomized Controlled Trial.Journal of participatory medicine · 2026Article
- Evaluating the reach, effectiveness, and maintenance of an online spinal cord injury research advocacy course to train research partners.Spinal cord · 2026Article
- The Participation of Older Persons in the Adoption of Age-Friendly Care Models in Hospital Settings: A Scoping Review.Nursing & health sciences · 2026Article
- Learning from 30 years of systems thinking in healthcare.Frontiers in health services · 2026Article
- Patient and public involvement in musculoskeletal pain research: using mutual learning to improve research quality.Therapeutic advances in musculoskeletal disease · 2026Review
- Article
- Developing and applying the 'Participatory Research to Action Framework' for meaningful engagement of experts-by-experience in applied health services research: a case study approach.Research involvement and engagement · 2025Article
- Conceptualizing culture change as an impact metric. A scoping review and abductive thematic analysis of culture-related outcomes from patient and public involvement in healthcare and health research.Research involvement and engagement · 2025Review
- Lifeworld-led research: a phenomenological approach to grant experts by experience in vulnerable positions their right to participate in healthcare research.International journal of qualitative studies on health and well-being · 2025Review
- Letter to the Editor - Qualitative evidence submitted by patients to NICE: need for more quality or unrealistic and unfair requirements?Journal of comparative effectiveness research · 2025Article
- Involving consumers in health research through the use of consumer panels: a scoping review.Research involvement and engagement · 2025Review
Corrections and comments
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Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Patient engagement (PE) has become embedded in discussions about health service planning and quality improvement, and the goal has been to find ways to observe the potential beneficial outcomes associated with PE. Patients and health care professionals use various terms to depict PE, for example, partnership and collaboration. Similarly, tokenism is consistently used to describe PE that has gone wrong. There is a lack of clarity, however, on the meanings and implications of tokenism on PE activities. The objective of this concept analysis was to examine the peer-reviewed and gray literature that has discussed tokenism to identify how we currently understand and use the concept. This review discusses 4 dimensions of tokenism: unequal power, limited impact, ulterior motives, and opposite of meaningful PE. These dimensions explicate the different components, meanings, and implications of tokenism in PE practice. The findings of this review emphasize how tokenism is primarily perceived as negative by supporters of PE, but this attribution depends on patients' preferences for engagement. In addition, this review compares the dimensions of tokenism with the levels of engagement in the International Association of the Public Participation spectrum. This review suggests that there are 2 gradations of tokenism; while tokenism represents unequal power relationships in favor of health care professionals, this may lead to either limited or no meaningful change or change that is primarily aligned with the personal and professional goals of clinicians, managers, and decision-makers.
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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.