ArticleBMJ open2014
From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials.
Article in BMJ open, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 63 papers, 3 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
63 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Pooled it
- Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.Health expectations : an international journal of public participation in health care and health policy · 2019Pooled it
- Supporting public involvement in interview and other panels: a systematic review.Health expectations : an international journal of public participation in health care and health policy · 2017Pooled it
- A report on parent involvement in planning a randomised controlled trial in neonatology and lactation - insights for current and future research.International breastfeeding journal · 2022Trial
- Trial
- Patient involvement in developing a patient-targeted feedback intervention after depression screening in primary care within the randomized controlled trial GET.FEEDBACK.GP.Health expectations : an international journal of public participation in health care and health policy · 2021Trial
- Doing community involvement care-fully: using an ethic of care to guide involvement in research on women's health after pregnancy complications and loss.Research involvement and engagement · 2025Article
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The development of a brain injury survivor patient and public involvement group by a brain injury survivor.PloS one · 2025Article
- Establishing patient partners' roles on research teams: a scoping review.Research involvement and engagement · 2024Article
- The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: A Modified Delphi Study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol.BMJ open · 2024Article
- Evaluating patient participation in value-based healthcare: Current state and lessons learned.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health.Research involvement and engagement · 2024Article
- Patient involvement in research within the Gynecological Cancer InterGroup: A call to action for a systematic approach: Results from a survey.Health science reports · 2023Article
- Implementing early rehabilitation and mobilisation for children in UK paediatric intensive care units: the PERMIT feasibility study.Health technology assessment (Winchester, England) · 2023Article
- Stakeholders' perspectives and experiences of patient and public involvement (PPI) in clinical trials in maternal and neonatal healthcare: protocol for a qualitative evidence synthesis.HRB open research · 2023Article
- Understanding how patients' pain beliefs influence chronic low back pain management in Ghana: a grounded theory approach.BMJ open · 2022Article
- The experience of patient partners in research: a qualitative systematic review and thematic synthesis.Research involvement and engagement · 2022Review
- Selection of endpoints in breast cancer clinical trials: a qualitative study of key trial stakeholders.American journal of cancer research · 2022Article
3 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
Abstract
unlabelled: Patient and public involvement (PPI) in research is increasingly required, although evidence to inform its implementation is limited.
objectiveInform the evidence base by describing how plans for PPI were implemented within clinical trials and identifying the challenges and lessons learnt by research teams.
methodsWe compared PPI plans extracted from clinical trial grant applications (funded by the National Institute for Health Research Health Technology Assessment Programme between 2006 and 2010) with researchers' and PPI contributors' interview accounts of PPI implementation. Analysis of PPI plans and transcribed qualitative interviews drew on the Framework technique.
resultsOf 28 trials, 25 documented plans for PPI in funding applications and half described implementing PPI before applying for funding. Plans varied from minimal to extensive, although almost all anticipated multiple modes of PPI. Interview accounts indicated that PPI plans had been fully implemented in 20/25 trials and even expanded in some. Nevertheless, some researchers described PPI within their trials as tokenistic. Researchers and contributors noted that late or minimal PPI engagement diminished its value. Both groups perceived uncertainty about roles in relation to PPI, and noted contributors' lack of confidence and difficulties attending meetings. PPI contributors experienced problems in interacting with researchers and understanding technical language. Researchers reported difficulties finding 'the right' PPI contributors, and advised caution when involving investigators' current patients.
conclusionsEngaging PPI contributors early and ensuring ongoing clarity about their activities, roles and goals, is crucial to PPI's success. Funders, reviewers and regulators should recognise the value of preapplication PPI and allocate further resources to it. They should also consider whether PPI plans in grant applications match a trial's distinct needs. Monitoring and reporting PPI before, during and after trials will help the research community to optimise PPI, although the need for ongoing flexibility in implementing PPI should also be recognised.
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.