title: The INFORM project: a service user-led research endeavor.
abstract: Effective engagement with people who experience mental health care services, as research participants and as research leads, is presented. A group of volunteer mental health survivors, called INFORM, worked for 6 years to develop and complete a research project, exploring service user experience of a home treatment and crisis resolution service. Within the article, discussion is given to the significance of service continuity, alongside personal accounts of the impact and consequences of health care staff's interpersonal interactions. Two contrasting messages arise from this study: first, the articulation of what services users want from services, and how that relates to what they actually receive, continues to be a necessary debate and issue for consideration at a time of considerable health care reform. The second message is that such articulation, although necessary, is not sufficient in itself to ensure that services are responsive to service user needs and preferences. Findings from the evaluation are consistent with other service user-led research. However, what is also evident is that more work is required in enabling health care consumers to provide feedback that can then be used to inform practice and service delivery improvement.
authors.affiliation: School of Health Sciences, City University London, UK.
authors.forename: Sue
authors.initials: S
authors.lastname: Taylor
authors.forename: Stephen
authors.initials: S
authors.lastname: Abbott
authors.forename: Sally
authors.initials: S
authors.lastname: Hardy
mesh_terms: D003266:Continuity of Patient Care / Q000458:organization & administration*; D004645:Empathy; D006301:Health Services Needs and Demand; D006801:Humans; D008605:Mental Health Services / Q000458:organization & administration*; D017060:Patient Satisfaction; D011369:Professional-Patient Relations; D015397:Program Evaluation / Q000379:methods; D012107:Research Design; D011795:Surveys and Questionnaires; D006113:United Kingdom