Operationalising a model framework for consumer and community participation in health and medical research

The Consumers' Health Forum of Australia and the National Health and Medical Research Council has recently developed a Model Framework for Consumer and Community Participation in Health and Medical Research in order to better align health and medical research with community need, and improve the impact of research. Model frameworks may have little impact on what goes on in practice unless relevant organisations actively make use of them. Philanthropic and government bodies have reported involving consumers in more meaningful or collaborative ways of late. This paper describes how a large charity organisation, which funds a significant proportion of Australian cancer research, operationalised the model framework using a unique approach demonstrating that it is both possible and reasonable for research to be considerate of public values

Critical perspectives on ‘consumer involvement’ in health research: epistemological dissonance and the know-do gap

Researchers in the area of health and social care (both in Australia and internationally) are encouraged to involve consumers throughout the research process, often on ethical, political and methodological grounds, or simply as ‘good practice’. This paper presents findings from a qualitative study in the UK of researchers’ experiences and views of consumer involvement in health research. Two main themes are presented in the paper. Firstly, we explore the ‘know-do gap’ which relates to the tensions between researchers’ perceptions of the potential benefits of, and their actual practices in relation to, consumer involvement. Secondly, we focus on one of the reasons for this ‘know-do gap’, namely epistemological dissonance. Findings are linked to issues around consumerism in research, lay/professional knowledges, the (re)production of professional and consumer identities and the maintenance of boundaries between consumers and researchers

'It puts a human face on the researched' - A qualitative evaluation of an Indigenous health research governance model

Objective - This study aimed to describe the Inala Aboriginal and Torres Strait Islander Community Jury for Health Research, and evaluate its usefulness as a model of Indigenous research governance within an urban Indigenous primary health care service from the perspectives of Jury members and researchers. Methods - Informed by a phenomenological approach and using narrative inquiry, a focus group was conducted with Jury members and key informant interviews were undertaken with researchers who had presented to the Community Jury in its first year of operation. Results - The Jury was a site of identity work for researchers and Jury members, providing an opportunity to observe and affirm community cultural protocols. Although researchers and Jury members had differing levels of research literacy, the Jury processes enabled respectful communication and relationships to form which positively influenced research practice, community aspirations and clinical care. Discussion - The Jury processes facilitated transformative research practice among researchers, and resulted in transference of power from researchers to the Jury members to the mutual benefit of both. Conclusion - Ethical Indigenous health research practice requires an engagement with Indigenous peoples and knowledges at the research governance level, not simply as subjects or objects of research