Developing a national strategy of consumer and community involvement (CCI) for women's health research

Rebecca L Madill; Leslie D Arnott; Lesley Pascuzzi; Katie Allen; Angela L Todd; Janette Perz; Helen Bolger-Harris; Gita D Mishra; Jacqueline A Boyle

doi:10.1186/s40900-023-00504-8

Developing a national strategy of consumer and community involvement (CCI) for women's health research

Res Involv Engagem. 2023 Oct 18;9(1):96. doi: 10.1186/s40900-023-00504-8.

Authors

Rebecca L Madill¹, Leslie D Arnott¹, Lesley Pascuzzi², Katie Allen³, Angela L Todd⁴, Janette Perz⁵, Helen Bolger-Harris⁶, Gita D Mishra⁷, Jacqueline A Boyle⁸

Affiliations

¹ Monash Centre for Health Research and Implementation, Monash University, Clayton, VIC, Australia.
² Consumer Advisor/Advocate, Perth, WA, Australia.
³ Consumer Advisor/Advocate, Brisbane, QLD, Australia.
⁴ Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia.
⁵ Translational Health Research Institute, Western Sydney University, Penrith, NSW, Australia.
⁶ Women's Health Research Translation and Impact Network, Monash University, Clayton, VIC, Australia.
⁷ School of Public Health, Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia.
⁸ Health Systems and Equity, Eastern Health Clinical School, Monash University, Box Hill, VIC, Australia. jacqueline.boyle@monash.edu.

Abstract

Objective: To develop a consumer and community involvement (CCI) strategy for the Women's Health Research, Translation and Impact Network (WHRTN), an initiative of the Australian Health Research Alliance (AHRA).

Type of program: A national network, comprising representatives from 14 nationally-accredited research translation centres that aims to embed CCI at a systems level, to improve equity and health outcomes across women's health.

Methods: A CCI Sub-Committee of WHRTN was established, chaired by a Consumer Advisor/Advocate. This committee invited both internal and external Consumer Advisor/Advocates to participate in a workshop, to guide the development of WHRTN's CCI Strategy in women's health research.

Results: A CCI Strategy document was written with input from workshop attendees and leading academics in women's health and has now been implemented into WHRTN, informing all aspect of the Network's programs and activities.

Discussion: Broad and early consumer involvement can facilitate meaningful partnerships between researchers and community, and enable genuine consumer contributions to research across strategy development, priority setting and undertaking research. Appropriate finances and time need to be allocated for CCI, with training in CCI a key enabler for its effective implementation.

Keywords: Community participation; Health equity; Healthcare; Patient participation; Women’s health.

Plain language summary

Consumer and community involvement in research is increasingly recognised as an important component of high-quality research. It is now required by many research funders and organisations. However, researchers and organisations often struggle with how to initiate and implement consumer and community involvement at a systems level. In this paper, we outline the processes used to develop a national consumer and community involvement strategy for the Australian Health Research Alliance, Women’s Health Research Translation and Impact Network. This provides a roadmap of how organisations can achieve a framework that supports consumer and community involvement across the research pathway. The strategy highlights the need for broad and early inclusion of consumers in decision making, financing consumer involvement, allowing time to build partnerships, and inclusion of training for researchers and consumers.