ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Using social media for patient and public involvement and engagement in health research: The process and impact of a closed Facebook group.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. 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
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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.
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Who cites it
9 citing papers in PubMed.
- Embedding Patient and Public Engagement in a Cancer Project: Protocol for a Qualitative Study.JMIR research protocols · 2026Article
- Evolution of Patient and Public Involvement and Engagement in Health-Related Research: A Concept Analysis.Journal of advanced nursing · 2026Review
- An interdisciplinary, co-designed guide for return to running postpartum-a mixed-methods study.Frontiers in sports and active living · 2026Article
- What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review.Research involvement and engagement · 2024Review
- Article
- The Effects of a Parent-Focused Social Media Intervention on Child Sun Safety: Pilot and Feasibility Study.JMIR formative research · 2023Article
- Participant recruitment for paediatric research using social media: A practical 'how-to' guide for researchers.Nutrition & dietetics : the journal of the Dietitians Association of Australia · 2023Review
- Participatory evaluation of the process of co-producing resources for the public on data science and artificial intelligence.Research involvement and engagement · 2023Article
- Using social media for patient and public involvement and engagement in health research: The process and impact of a closed Facebook group.Health expectations : an international journal of public participation in health care and health policy · 2022Article
Corrections and comments
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Authors and funding
11 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAs part of a multifaceted approach to patient and public involvement and engagement (PPIE), alongside traditional methods, a closed Facebook group was established to facilitate PPIE feedback on various aspects of a project that used video-recording to examine risk communication in NHS Health Checks between June 2017 and July 2019.
objectiveTo explore the process and impact of conducting PPIE through a closed Facebook group and to identify the associated benefits and challenges.
methodsSupported by reflections and information from project meetings used to document how this engagement informed the project, we describe the creation and maintenance of the Facebook Group and how feedback from the group members was obtained. Facebook data were used to investigate levels and types of engagement in the closed Facebook group. We reflect on the challenges of using this method of engaging the public in health research.
resultsA total of 289 people joined the 'Risk Communication of Cardiovascular disease in NHS Health Checks' PPIE closed Facebook group. They provided feedback, which was used to inform aspects of the study, including participant-facing documents, recruitment, camera position and how the methodology being used (video-recorded Health Checks and follow-up interviews) would be received by the public. DISCUSSION: Using a closed Facebook group to facilitate PPIE offered a flexible approach for both researchers and participants, enabled a more inclusive method to PPIE (compared with traditional methods) and allowed rapid feedback. Challenges included maintaining the group, which was more labour intensive than anticipated and managing members' expectations. Suggestions for best practice include clear communication about the purpose of the group, assigning a group co-ordinator to be the main point of contact for the group, and a research team who can dedicate the time necessary to maintain the group.
conclusionThe use of a closed Facebook group can facilitate effective PPIE. Its flexibility can be beneficial for researchers, patients and public who wish to engage in the research process. Dedicated time for sustained group engagement is important. PATIENT OR PUBLIC CONTRIBUTION: Patient representatives were engaged with the development of the research described in this paper and a patient representative reviewed the manuscript.
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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.