ArticleJournal of mental health (Abingdon, England)2016
Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?
Article in Journal of mental health (Abingdon, England), 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 46 papers, 2 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
46 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pooled it
- Participatory research with carers: A systematic review and narrative synthesis.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Embedding patient and public involvement in dementia research: Reflections from experiences during the 'Journeying through Dementia' randomised controlled trial.Dementia (London, England) · 2022Trial
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Public involvement and co-design of longitudinal studies of sleep health alongside young people with rare genetic conditions.Research involvement and engagement · 2026Article
- Engagement in Cancer Epidemiology Cohorts.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2026Article
- Experiences of current practice, priorities and strategies for enabling meaningful consumer and community involvement collaborations in health and medical research in Queensland, Australia.Research involvement and engagement · 2026Article
- Implementation Strategies for Strengthening Community and Stakeholder Engagement in Clinical and Translational Pilot Studies.Journal of participatory research methods · 2026Article
- Mixed identity is an identity: embracing the people involved in research partnerships.BMJ open · 2025Review
- Creating the conditions for meaningful and effective PPIE in community-based public health research: learning from a UK-wide lived experience panel.Research involvement and engagement · 2025Article
- Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America.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
- Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study.JMIR research protocols · 2025Article
- Engaging older adults in the process of aging research: a multimethod study evaluating the experience and efficacy of a citizen advisory group for a dementia risk reduction program.Research involvement and engagement · 2024Article
- Recommendations for successful involvement of patient partners in complex intervention research: a collaborative learning process.Research involvement and engagement · 2024Article
- The psychological effects of research participation on people with dementia: findings from a German exploratory interview study.Frontiers in dementia · 2024Article
- Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study.Research involvement and engagement · 2023Article
- Exploring the outcomes of research engagement using the observation method in an online setting.BMJ open · 2023Article
- Cocreation of Assistive Technologies for Patients With Long COVID: Qualitative Analysis of a Literature Review on the Challenges of Patient Involvement in Health and Nursing Sciences.Journal of medical Internet research · 2023Review
- A balance between putting on the researcher's hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research.Health research policy and systems · 2022Article
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
backgroundStudy feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages.
aimsThis study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them.
method143 patients and carers across the Clinical Research Network (CRN) responded to an online semi-structured questionnaire (developed using participatory methodology). Quantitative and qualitative data were analysed.
resultsA range of benefits were reported, including providing a life focus and an improved relationship with illness. Less positive experiences regarding time and money and lack of acknowledgement were also reported, along with suggestions for improvement.
conclusionsPPI confers many benefits on patients and carers which could increase PPI recruitment if made explicit. More involvement in study recruitment and dissemination would increase the effectiveness of PPI input. Involving a more varied socioeconomic demographic and at an earlier stage is vital. Financial support for lower earners and greater feedback following involvement should also be explored.
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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.