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. DESIGN, DATA COLLECTION AND ANALYSIS: 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.