ArticleResearch involvement and engagement2023
#HowNotToDoPatientEngagement: the engaging with purpose patient engagement framework based on a twitter analysis of community perspectives on patient engagement.
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. Cited by 9 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
9 citing papers in PubMed, 6 citations in OpenAlex.
- Ripple effects of a patient & health-system partnered engagement project: a co-developed protocol.Research involvement and engagement · 2026Review
- A conceptual matrix model of patient involvement and patient expertise in medicines and medical technology research and development.Research involvement and engagement · 2026Article
- The FOCUS model: A guide to promote patient partnership in clinical trial designs.Journal of clinical and translational science · 2026Article
- Article
- Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study.Journal of participatory medicine · 2025Article
- Critical patient-oriented research: a fundamental shift in patient engagement.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2025Article
- Patient engagement strategies in digital health interventions for cancer survivors: A scoping review.PLOS digital health · 2025Article
- Lessons learned from the participatory development of a framework to actively involve people living with dementia, individuals from their social networks, and healthcare professionals in systematic reviews: the DECIDE-SR study.Research involvement and engagement · 2025Article
- Using the Power Wheel as a transformative tool to promote equity through spaces and places of patient engagement.BMJ open · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundEvaluation of patient engagement practices are frequently researcher-driven, researcher-funded, and asymmetric in power dynamics. Little to no literature on patient experiences in patient engagement exist that is are not framed by institutionally-driven research inquiries (i.e., from the lens of a research team lead, or healthcare administrative setting). Understanding these perspectives can help us understand: (i)what matters to patients when they are engaged in research; (ii)why it matters to them, and(iii) how to improve patient engagement practices, so that the needs and priorities of patients are consistently met.
methodsThis is a patient partner-initiated study. Study authors (including patient partners) conducted a conventional and summative content analysis of textual data retrieved from a highly engaged conversation on Twitter regarding the hashtags #HowNotToDoPatientEngagement and #HowToDoPatientEngagement posted between February 2018 to June 2021. Twitter is a microblogging platform that allows for free-flowing discussions between users not pre-bound by specific community groupings (like within that of Facebook).
resultsA total of 276 tweets were retrieved from 178 separate contributors across seven geographical locations. Four stakeholder groups were identified. We generated 24 codes, nine subthemes and five overarching themes: respect, support, collaboration, inclusivity and impact. Four of these themes are closely aligned with the Strategy for Patient Oriented (SPOR) Patient Engagement framework. We identify impact as a separate and new theme.
interpretationBased on our findings we offer the Engaging with Purpose Patient Engagement Framework that defines and describes respect, support, collaboration, inclusivity and impact as five key pillars of meaningful patient engagement.
Indexed as
Identifiers
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.