User involvement in the development of a research bid: barriers, enablers and impacts1
Open accessAbstract
OBJECTIVE: To involve users in the development of a research bid to examine parents' experiences of having a pre-term baby, and to examine the barriers, enablers and impacts of user involvement. DESIGN: A mainly collaborative approach to user involvement was adopted, although different types of involvement were evident at different stages of the project. Users' experiences and perspectives provided the focus for the regular meetings which underpinned the writing of the research bid. The researcher acted as a facilitator in the development of the bid, with input from users and the wider advisory group. MAIN OUTCOMES: User involvement had an important impact on the development of the research aims, methods and on ethical aspects. Through careful collaboration a research bid was produced which was rooted in users' experiences, whilst also addressing key research questions. Key enablers for involvement included good working relationships, funding for the lead researchers time. Barriers included lack of financial support for users, the time-consuming nature of involvement and the language of research. CONCLUSIONS: If user involvement remains an international policy imperative with little if any support at the vital stage of bid development, policy-makers, service user organizations, researchers, health service providers and commissioners will need to recognize the limited nature of involvement that may result and the impact this would have on the evidence base. Researchers will need to recognize the resource implications of involvement at this point, and user groups will need to decide whether to participate when there is the greatest chance of influencing research but little or no funding.
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Many of these groups were able to reimburse lay members for work in developing grant applications, a particularly challenging issue raised by many that could then be addressed.
“Many of these groups were also able to reimburse lay members for work in developing grant applications, a particularly challenging issue raised by many 17 that could then be addressed.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [17]
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- Authors
- Staniszewska, S., Jones, N., Newburn, M., & Marshall, S.
- Affiliations
- John Radcliffe Hospital (GB)
- National Childbirth Trust (GB)
- Bliss (GB)
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2007-05-22
- Volume
- 10
- Issue
- 2
- Pages
- 173-183
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC5060394
- OpenAlex
- W2143656101
- Cited by
- 112
- References
- 21
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 10 · 2023: 6 · 2022: 3 · 2021: 4 · 2020: 11 · 2019: 7 · 2018: 5 · 2017: 7 · 2016: 5 · 2015: 5 · 2014: 11 · 2013: 10 · 2012: 6
- FWCI
- 7.87
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Health Expectations (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Alzheimer's Society
- University of Cambridge
- University of Warwick
- University College London
- University of Oxford
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
- Keywords
- user participation, preterm birth, parental experiences, research collaboration, research funding, research ethics
- MeSH terms
- Cooperative Behavior, Female, United Kingdom, Health Services Accessibility, Humans, Infant, Newborn, Interprofessional Relations, Motivation, Parents, Pregnancy, Professional-Patient Relations, Research Design, Research Support as Topic, Patient Selection, Advisory Committees, Biomedical Research, Premature Birth
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