Public and patient involvement in government health funding decision making in Australia.

Abstract

This research project aimed to understand the perspectives of research participants who are directly involved in participating or organising processes to engage patient organisations in Australia or are considered marginalised voices in these processes. The public-involvement processes examined were the ones used by two Advisory Committees to the Australian Department of Health (DoH) to engage the public when providing advice related to health care funding decisions based on Health Technology Assessment (HTA). This is a qualitative research project and two theoretical frameworks were employed to guide the project design, the criteria for purposive sampling, data collection and analysis. Framework 1 was based on work by Rowe and Frewer to evaluate the structure of involvement processes. Framework 2 was chosen to provide a critical perspective to the project and was based on works by Michel Foucault. Interviewees were Advisory Committee chairs and consumer representatives, patient organisations that participated in the involvement processes and patient organisations that did not participate but were expected to (potential participants). Two papers included in the thesis report the main findings of the project. Paper 1 presented the findings analysed using Framework 1. It described issues with some procedures of the involvement processes identified by the interviewees. In particular, Advisory Committee members believed that the structure of the involvement processes (procedural aspects) need to be improved; by contrast, most patient organisations identified a need for Advisory Committees to adopt alternative involvement processes. Paper 1 has been submitted to the journal Health Expectations. Paper 2 adopted Foucauldian concepts about ‘truth’, ‘knowledge’ and ‘power’ to uncover issues related to the interviewees conceptualisations of what counts as evidence in the context of HTA. Using the same lens it also examines the nature of the relationships between the actors participating in the involvement processes and the influence of these relationships on the outcomes. We found that: 1) patients and health professionals have different views of what is relevant to consider in evaluating health technologies and this arises from their different epistemological standpoints; and 2) relationships between stakeholders also affect the outcomes of involvement processes. Paper two will be submitted to the journal Social Science & Medicine. The final chapter of the thesis provides recommendations for changes in the way in which patients are engaged in involvement processes organised by Advisory Committees to advise DoH in funding decisions for health technologies. The main recommendations are: 1) The current involvement processes should be changed (in particular the processes should be: better promoted; language used should be simplified; the processes should be made more transparent, more time should be allowed for patient organisations, patients, and consumer (patient) representatives to take part in the process and, involvement should happen at multiple stages). 2) Alternative involvement processes are needed, particularly deliberative processes that would allow the stakeholders to discuss their different understandings and points of view and reach consensus.