title: What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke.
abstract: BACKGROUND
  Health researchers are encouraged to involve service users as partners in their research. There is a need to increase the evidence base of involvement, including an accumulation of empirical accounts of involvement practices, demonstrating how involvement influences research and refinement of the concept itself.
  
  
  OBJECTIVE
  To report the development of a pilot study by academic researchers and stroke service users belonging to a user research group to investigate costs of stroke to individuals and families; to reflect on what this example of user involvement achieved and implications for what involvement means.
  
  
  METHODS
  We conducted a 2-year ethnographic study that included participant observation, formal and informal interviews with professionals and user group members and documentary analysis. Data were systematically recorded to permit description of processes and reflexive analysis.
  
  
  CONCLUSIONS
  We report on five stages of the research process from service user identification of a research question to interpretation of pilot study findings. Professional researchers led the research process and developed a novel method to involve stroke service users in the development of a questionnaire. Some academic colleagues questioned the value of the proposed investigation as it did not appear to conform to implicit criteria of quality research. We argue that the moral status that user involvement has acquired means that academics' concerns about quality did not prevent the pilot study from being conducted. We suggest that much of what was undertaken might be considered standard good practice in developing new research studies but also identify additional benefits of user involvement. Implications for conceptual development and evaluation are discussed.
authors.affiliation: Reader, Division of Health and Social Care Research, King's College London, London, UK. christopher.mckevitt@kcl.ac.uk
authors.forename: Christopher
authors.initials: C
authors.lastname: McKevitt
authors.forename: Nina
authors.initials: N
authors.lastname: Fudge
authors.forename: Charles
authors.initials: C
authors.lastname: Wolfe
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017281:Cost of Illness; D005260:Female; D005382:Financing, Personal / Q000191:economics*; D006801:Humans; D008131:London; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D010865:Pilot Projects; D012106:Research; D020521:Stroke / Q000191:economics*; D011795:Surveys and Questionnaires; D055815:Young Adult
references.citation: BMJ. 2002 Aug 24;325(7361):415
references.pmid: 12193356
references.citation: Fam Pract. 2005 Feb;22(1):8-14
references.pmid: 15640297
references.citation: J Clin Neurosci. 2004 Feb;11(2):134-7
references.pmid: 14732370
references.citation: Br Med Bull. 2000;56(2):275-86
references.pmid: 11092079
references.citation: Health Expect. 2007 Jun;10(2):173-83
references.pmid: 17524010
references.citation: Health Policy. 2006 Apr;76(2):156-68
references.pmid: 16006004
references.citation: BMJ. 2000 Jan 1;320(7226):50-2
references.pmid: 10617534
references.citation: Eur J Cancer Care (Engl). 2008 May;17(3):233-44
references.pmid: 18419626
references.citation: Age Ageing. 2006 May;35(3):273-9
references.pmid: 16638767
references.citation: BMJ. 2000 Dec 2;321(7273):1400-2
references.pmid: 11099288
references.citation: Health Policy. 2002 Aug;61(2):213-36
references.pmid: 12088893
references.citation: J Clin Nurs. 2005 Mar;14 Suppl 1:48-53
references.pmid: 15819660
references.citation: Sociol Health Illn. 2004 Sep;26(6):679-94
references.pmid: 15383036
references.citation: Health Expect. 2007 Sep;10(3):268-77
references.pmid: 17678515
references.citation: Stroke. 2006 Mar;37(3):865-71
references.pmid: 16456122
references.citation: Soc Sci Med. 2002 Oct;55(8):1325-36
references.pmid: 12231012
references.citation: Health Expect. 2008 Mar;11(1):72-84
references.pmid: 18275404
references.citation: Health Soc Care Community. 2006 Nov;14(6):465-73
references.pmid: 17059488
references.citation: BMJ. 2008 Feb 9;336(7639):313-7
references.pmid: 18230646