ArticleResearch involvement and engagement2019
How helpful are Patient and Public Involvement strategic documents - Results of a framework analysis using 4Pi National Involvement Standards.
Article in Research involvement and engagement, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis 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
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- Tensions in patient involvement and engagement in health research and development: a qualitative interview study with key actors.Research involvement and engagement · 2026Article
- Real-Time Cardiac Biofeedback Intervention: Experiences of Patient and Public Involvement in a Randomized Controlled Trial.Journal of participatory medicine · 2026Article
- Development of a 4Pi national involvement standards-based questionnaire to evaluate patient and public involvement.Research involvement and engagement · 2026Article
- Coproducing an Ecological Momentary Assessment Measurement Burst Mental Health Study With Young People: The MHIM Coproduction Protocol.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Integrating patient and public involvement into co-design of healthcare improvement: a case study in maternity care.BMC health services research · 2025Article
- Co-producing rapid research: Strengths and challenges from a lived experience perspective.Frontiers in sociology · 2023Article
- Developing catalyst films of health experiences: an analysis of a robust multi-stakeholder involvement journey.Research involvement and engagement · 2022Article
- A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".Research involvement and engagement · 2022Article
- Patient and public involvement and engagement with cardiac arrest survivors.British paramedic journal · 2022Article
- Patient and public involvement in the build-up of COVID-19 testing in Sweden.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers.Research involvement and engagement · 2021Article
- Exploring disconnected discourses about Patient and Public Involvement and Volunteer Involvement in English health and social care.Health expectations : an international journal of public participation in health care and health policy · 2021Review
- "A little (PPI) MAGIC can take you a long way" : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961).Research involvement and engagement · 2021Article
- Co-design of Guidance for Patient and Public Involvement in Psychedelic Research.Frontiers in psychiatry · 2021Article
- 'All hands-on deck', working together to develop UK standards for public involvement in research.Research involvement and engagement · 2020Article
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient and Public Involvement (PPI) strategic documents are viewed as an essential feature of organisational commitment to openness and transparency. They provide a mechanism to communicate opportunities for wider community influence in healthcare. The absence of documentation can be negatively interpreted, for example during regulatory inspection, as a lack of intent by organisations to collaborate with a broad constituency. Published literature paints a confusing picture of rationale and evidence that could provide the foundation for strategic action. This makes it difficult for those responsible for turning goals into meaningful involvement. We investigated how content is presented and organised in strategic documents. This pragmatic study is intended to stimulate reflective practice, promote debate and generate further inquiry with a wide audience.
methodsWe created and iterated a framework adapted from 4Pi National Involvement Standards to analyse organisational PPI strategic documents against five domains which are principles, purpose, presence, process and impact. Fifteen strategic documents were grouped into four categories (acute care providers; clinical commissioning groups; community healthcare providers; and other) and included for analysis. A matrix was produced. By reading the matrix vertically (down) and horizontally (across), comparisons can be made between 4Pi domains and across organisations.
resultsThere was no discernible pattern between domains or between organisations. There was variation in the level to which criteria were met. No single strategy fully met the criteria for all five domains of 4Pi National Involvement Standards. The criteria for purpose was fully met in eight strategic documents. Only two documents fully met impact criteria. Four organisations showed better completeness with fully or partially met criteria across five domains. A single organisation partially met the criteria for all domains. The remaining 10 were unable to meet the criteria in at least one domain.
conclusionOur findings align with published literature that suggests the underpinning rationale for PPI is confusing. A strategic aim is difficult to articulate. Context and complexity are at play making the sharing of generalisable knowledge elusive. We offer further critique about the value of these documents and consider: 'is there an alternative approach to construct PPI strategy to generate theory, capture learning and evaluate effectiveness at the same time?' We suggest testing the adoption of programme theory in PPI. The emergent nature and context sensitive features of programme theory enable curiosity, creativity and critical appraisal. It has the potential to release practitioners from the tokenistic cycle of monitoring and reporting and replace this with a richer understanding of 'what' works and 'how' tied to a 'why' - in order to achieve a shared aim that everyone can get behind.
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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.