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Assessing the promise of user involvement in health service development: ethnographic study
Open accessAbstract
OBJECTIVES: To understand how the policy of user involvement is interpreted in health service organisations and to identify factors that influence how user involvement is put into practice. DESIGN: Ethnographic study using participant observation, interviews, and collection of documentary evidence. SETTING: A multiagency modernisation programme to improve stroke services in two London boroughs. PARTICIPANTS: Service users, National Health Service managers, and clinicians. RESULTS: User involvement in the programme was initiated and led by professionals. Professionals determined the areas of service improvement service users could participate in. A wide range of activities were considered "user involvement," from patient satisfaction surveys to service users delivering peer support. Involvement tended to be most active in the least technical areas and areas with least input from clinicians. Factors that might explain this included organisational structure, the vagueness of the concept of user involvement, the value attributed to service users' experiential knowledge, and variations in professional and service user understandings of and commitment to involvement. The gains of involvement were harder to identify in terms of impact on services. More evident were the personal gains for those involved: satisfaction of feeling listened to by professionals, social opportunities of meeting others in a similar situation, and increased knowledge about stroke and services available. CONCLUSIONS: User involvement may not automatically lead to improved service quality. Healthcare professionals and service users understand and practise user involvement in different ways according to individual ideologies, circumstances, and needs. Given the resource implications of undertaking user involvement in service development there is a need for critical debate on the purpose of such involvement as well as better evidence of the benefits claimed for it.
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“Fudge et al [73] also found that learning from others in similar situations was one of patients’ motives to attend meetings in a user-involved program for improvement of health services for people with stroke.”
From Long-Term Engagement With a Mobile Self-Management System for People With Type 2 Diabetes (2013) · cites this paper as [73]
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Metadata
- Authors
- Fudge, N., Wolfe, C. D. A., & McKevitt, C.
- Affiliations
- King's College London (GB)
- Corresponding author
- Fudge, Nina
- Venue
- BMJ
- Publisher
- BMJ
- Published
- 2008-01-29
- Volume
- 336
- Issue
- 7639
- Pages
- 313-317
- ISSN
- 0007-1447 (ISSN-L)
- 0959-8138
- 1468-5833
- PMC
- PMC2234509
- OpenAlex
- W2023760594
- Cited by
- 200
- References
- 30
- Citations by year
- 2026: 2 · 2025: 1 · 2024: 6 · 2023: 8 · 2022: 4 · 2021: 8 · 2020: 15 · 2019: 7 · 2018: 11 · 2017: 18 · 2016: 18 · 2015: 13 · 2014: 17 · 2013: 20 · 2012: 11
- FWCI
- 26.35
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- BMJ (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Research Portal (King's College London) (submittedVersion)
- HighWire Press Open Archive (submittedVersion)
- Queen Mary Research Online (Queen Mary University of London) (submittedVersion, cc-by)
- Funders
- NIHR Biomedical Research Centre, Royal Marsden NHS Foundation Trust/Institute of Cancer Research
- National Institute for Health and Care Research (RP-PG-0407-10184)
- King's College London
- Stanley Thomas Johnson Stiftung
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Health Services Management and Policy
- Health Sciences › Health Professions › General Health Professions › Patient Satisfaction in Healthcare
- Keywords
- user participation, service user involvement, health service development, stroke care, service modernization, service user experiences, peer support, organizational structure, service quality, health policy implementation
- MeSH terms
- Communication, Humans, Health Knowledge, Attitudes, Practice, London, Patient Participation, State Medicine, Stroke
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