ArticleJournal of care services management2013
Sustaining patient and public involvement in research: A case study of a research centre.
Article in Journal of care services management, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 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
23 citing papers in PubMed.
- Building capacity for leadership in family engagement in neurodevelopmental disability and child health research: A qualitative evaluation of the Family Engagement in Research Leadership Academy.Research involvement and engagement · 2026Article
- The Threefold Path to Equity: Approaches for Health and Aging Researchers.The Gerontologist · 2024Article
- Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications.Research involvement and engagement · 2023Article
- Optimising the process of knowledge mobilisation in Communities of Practice: recommendations from a (multi-method) qualitative study.Implementation science communications · 2023Article
- Impact of patient and public (PPI) involvement in the Life After Prostate Cancer Diagnosis (LAPCD) study: a mixed-methods study.BMJ open · 2022Article
- Developing and testing guidance to support researchers engaging patient partners in health-related research.Research involvement and engagement · 2022Article
- The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot).Research involvement and engagement · 2021Article
- Assessing public perception of a sand fly biting study on the pathway to a controlled human infection model for cutaneous leishmaniasis.Research involvement and engagement · 2021Article
- Conceptualising and constructing 'diversity' through experiences of public and patient involvement in health research.Research involvement and engagement · 2021Article
- Involving service users in the Birth Timing project, a data linkage study analysing the timing of births and their outcomes.International journal of population data science · 2020Article
- Understanding the uptake of a clinical innovation for osteoarthritis in primary care: a qualitative study of knowledge mobilisation using the i-PARIHS framework.Implementation science : IS · 2020Article
- Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process.Health expectations : an international journal of public participation in health care and health policy · 2019Review
- A co-produced method to involve service users in research: the SUCCESS model.BMC medical research methodology · 2019Article
- Learning as an outcome of involvement in research: what are the implications for practice, reporting and evaluation?Research involvement and engagement · 2019Article
- Preparing researchers for patient and public involvement in scientific research: Development of a hands-on learning approach through action research.Health expectations : an international journal of public participation in health care and health policy · 2018Article
- The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study.Research involvement and engagement · 2018Article
- Social and material aspects of life and their impact on the physical health of people diagnosed with mental illness.Health expectations : an international journal of public participation in health care and health policy · 2017Article
- Patient involvement in rheumatology outpatient service design and delivery: a case study.Health expectations : an international journal of public participation in health care and health policy · 2017Article
- Process and impact of patient involvement in a systematic review of shared decision making in primary care consultations.Health expectations : an international journal of public participation in health care and health policy · 2017Article
- Successful Stepwise Development of Patient Research Partnership: 14 Years' Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT).The patient · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The literature on patient and public involvement (PPI) in research covers a wide range of topics. However, one area of investigation that appears under developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper presents a case study of PPI development in one primary care research centre in England, and its approach to making this sustainable using documentary sources and material from a formal evaluation. We provide narrative accounts of the set-up, operation and main processes of PPI, and its perceived impact. PPI requires a long-term perspective with participation and trust growing over time, and both users and researchers learning what approaches work best. PPI is a complex interplay of clarity of purpose, defined roles and relationships, organised support (paid PPI staff) and a well-funded infrastructure. 'Soft systems' are equally important such as flexible and informal approaches to meetings, adapting timetables and environments to meet the needs of lay members and to create spaces for relationships to develop between researchers and lay members that are based on mutual trust and respect. This case study highlights that the right combination of ethos, flexible working practices, leadership, and secure funding goes a long way to embedding PPI beyond
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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.