ArticleResearch involvement and engagement2020
The role of patient and public involvement leads in facilitating feedback: "invisible work".
Article in Research involvement and engagement, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 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
30 citing papers in PubMed.
- Embedding patient and public involvement in dementia research: Reflections from experiences during the 'Journeying through Dementia' randomised controlled trial.Dementia (London, England) · 2022Trial
- How, why, for whom, and in what contexts organisational and team dynamics shape, and are shaped by, service user researchers in higher education mental health research centres: a realist review protocol.Research involvement and engagement · 2026Review
- "We don't get asked": including people with workforce experience as public contributors in a workforce-related study about homecare work towards the end-of-life.Research involvement and engagement · 2026Article
- What added value does Patient and Public Involvement (PPI) in oncology research bring to cancer patients and what are the challenges in realizing it? A mixed-methods cross-sectional study in four PPI groups in Flanders (Belgium).Research involvement and engagement · 2026Article
- Patient and public involvement in health and social care doctoral research: recommendations co-produced by doctoral researchers, public contributors, and a public involvement coordinator.Research involvement and engagement · 2026Article
- Development of a Patient and Carer Advisory Board to Co-Design Health Services Research for the Quality of Care of People With Dementia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement.Health expectations : an international journal of public participation in health care and health policy · 2026Review
- From tokenism to transformation: lessons from the TOGETHER study for building inclusive and equitable research.Research involvement and engagement · 2026Article
- Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial.Research involvement and engagement · 2026Article
- Communicating the ethical, legal, and social issues in neurobiobanking and stroke genomic research in Africa: Project intervention tools development and evaluation procedures.Journal of stroke and cerebrovascular diseases : the official journal of National Stroke Association · 2025Article
- Experience, Process, and Impact of Involving Informal Caregivers of People With Dementia as Public Contributors to Inform the Development of a Complex Intervention: A Mixed-Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence.Research involvement and engagement · 2025Review
- Public Involvement in a Systematic Review Project: Reporting Our Approach Using the ACTIVE Framework.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Patient and public involvement in dementia and neuroprogressive conditions: commentary from NHS Scotland based 'partners in research'.Research involvement and engagement · 2025Article
- "How would you handle this?" The impact of embedding early patient and public involvement in a biomechanical computational engineering doctoral research project.Research involvement and engagement · 2025Article
- Attitudes and perceptions regarding knowledge translation and community engagement in medical research: the PERSPECT qualitative study.Health research policy and systems · 2025Article
- Going beyond co-production: a public contributor led, local evaluation of the National Institute of Health and Social Care (NIHR) Research Champion role.Research involvement and engagement · 2025Article
- Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement.Palliative medicine · 2024Article
- "I am there just to get on with it": a qualitative study on the labour of the patient and public involvement workforce.Health research policy and systems · 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
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHealth research in the UK requires patients, those with lived experience and members of the public to be involved in designing and shaping research: many of them have reported that their comments and suggestions are not always acknowledged, and they do not know if their input has been used or is useful. The benefits of feedback from researchers not only create motivation for further involvement but aids learning and development, as well as recording impact. The aims of this study were to improve the feedback experience of Patient and Public Involvement (PPI) contributors. Co-produced feedback processes were designed and implemented in order to change feedback from researchers to PPI contributors in six PPI groups in England.
methodsAn explanatory mixed methods sequential study design was utilised with a comparative questionnaire survey (administered 20 months apart), interviews and a focus group with PPI leads, researchers and PPI contributors. Patient and Public Involvement contributors were involved from initial idea, study design, data analysis through to dissemination.
resultsCo-designed feedback processes were introduced in five of the six PPI groups and there was an overall increase in the frequency of feedback over the period studied. The enablers and barriers to implementing feedback processes were identified, which included the importance of wider institutional level support. PPI leads need to have dedicated time and acknowledge feedback as part of their role. The importance of individual feedback processes designed by, and for each PPI group, rather than a generic one, was also identified as key to successful implementation.
conclusionThe role of the PPI lead is an important facilitator in improving feedback but can easily be overlooked and has been described as invisible. PPI leads can perform an essential bridging role between researchers and members of the public. This study has shown that PPI feedback processes can be implemented if they are part of embedded PPI with explicit expectations, facilitated by a dedicated PPI lead role with sufficient support and resources. The findings have implications beyond this particular study, particularly for those involved in undertaking and funding health and social care research.
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.