Intended for healthcare professionals

Research

Assessing the promise of user involvement in health service development: ethnographic study

BMJ 2008; 336 doi: https://doi.org/10.1136/bmj.39456.552257.BE (Published 07 February 2008) Cite this as: BMJ 2008;336:313
  1. Nina Fudge, research associate1,
  2. Charles D A Wolfe, professor of public health12,
  3. Christopher McKevitt, senior research fellow1
  1. 1Division of Health and Social Care Research, King’s College London, London SE1 3QD
  2. 2National Institute for Health Research Comprehensive Biomedical Research Centre, Guy’s and St Thomas’ NHS Foundation Trust, London
  1. Correspondence to: N Fudge nina.fudge{at}kcl.ac.uk
  • Accepted 14 November 2007

Abstract

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.

Footnotes

  • Contributors: NF collected, analysed, and interpreted the data and wrote the paper. CDAW conceived the study and revised the article critically for important intellectual content. CM conceived and designed the study, analysed and interpreted the data, and revised the article critically for important intellectual content. All three authors gave final approval of the version to be published. CM is the guarantor.

  • Funding: This study was funded by a grant from the Stanley Thomas Johnson Foundation. CM is funded by a Department of Health career scientist award. CDAW acknowledges financial support from the Department of Health through the National Institute for Health Research Biomedical Research Centre awarded to Guy’s and St Thomas’ NHS Foundation Trust in partnership with King’s College London.

  • Competing interests: None declared.

  • Ethical approval: This study was approved by the St Thomas’ Hospital local research ethics committee.

  • Provenance and peer review: Not commissioned; externally peer reviewed.

  • Accepted 14 November 2007
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