title: Understanding the role of patient organizations in health technology assessment.
abstract: BACKGROUND
  The involvement of patient representatives in health technology assessment is increasingly seen by policy makers and researchers as key for the deployment of patient-centred health care, but there is uncertainty and a lack of theoretical understanding regarding the knowledge and expertise brought by patient representatives and organisations to HTA processes.
  
  
  OBJECTIVE
  To propose a conceptually-robust typological model of the knowledge and expertise held by patient organisations.
  The study followed a case-study design. Data were collected within an international research project on patient organisations' engagement with knowledge, and included archival and documentary data, in-depth interviews with key members of the organisation and participant observation. Data analysis followed standard procedure of qualitative analysis anchored in an analytic induction approach.
  
  
  RESULTS
  Analysis identified three stages in the history of the patient organisation under analysis - Alzheimer's Society. In a first period, the focus is on 'caring knowledge' and an emphasis on its volunteer membership. In a transition stage, a combination of experiential, clinical and scientific knowledge is proposed in an attempt to expand its field of activism into HTA. In the most recent phase, there is a deepening of its network of associations to secure its role in the production of evidence.
  
  
  CONCLUSIONS
  Analysis identified an important relationship between the forms of knowledge deployed by patient organisations and the networks of expertise and policy they mobilise to pursue their activities. A model of this relationship is outlined, for the use of further research and practice on patient involvement.
authors.affiliation: School of Applied Social Sciences, Durham University, Durham, UK.
authors.forename: Tiago
authors.initials: T
authors.lastname: Moreira
mesh_terms: D003657:Decision Making; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D019982:Organizational Case Studies; D010358:Patient Participation; D012107:Research Design; D013673:Technology Assessment, Biomedical / Q000379:methods*; D014837:Voluntary Health Agencies
keywords: health technolgy assessment; knowledge networks; patient and public involvement; quality of life in dementia