Understanding the role of patient organizations in health technology assessment

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.