Scientific Papers

Developing a national strategy of consumer and community involvement (CCI) for women’s health research | Research Involvement and Engagement

The importance and increasing expectation of partnering with consumers in health and medical research in Australia has been outlined by a number of key organisations including the National Health and Medical Research Council (NHRMC) [1], the Australian Health Research Alliance (AHRA) [2] and the Australian Commission on Safety and Quality in Health Care [3]. This is also true for the international context where countries such as Canada [4], the United Kingdom [5] and the United States of America [6], outline increased requirements for patient and public involvement, patient centred research, consumers and/or community representatives to be involved in health and medical research.

Consumers help research to be more community-relevant and meaningful [3] yet embedding Consumer and Community Involvement (CCI) at a systems level to support research remains challenging. Importantly, having consumers who can represent their broader communities is critical. Consumers are people who have a lived experience of a health issue or are people who represent the views and interests of a consumer organisation, a community or a wider constituency [7, 8] Consumer groups often require representation by consumer advisor/advocates to provide a voice, to any concerns they may have about their care [8]. Consumer Advisor/Advocates are individuals who bring both their personal and communities’ lived experiences and knowledge to research activities, to influence health care outcomes [9, 10].

Here we outline a comprehensive process that has facilitated development of a national strategy with identifiable benefits of CCI including recognition of a shared purpose by researchers and Consumer Advisor/Advocates to affect systems level change. The term Consumer Advisor/Advocate was informed by both Indigenous and non-Indigenous WHRTN consumers who believed this term more accurately reflected the work they provided and the term used by their communities.

Defining consumer and community involvement

CCI in health and medical research has increased across Australia over the last decade and is a term increasingly used within research to describe the involvement of consumers as partners in research practices, polices and processes [11, 12]. Internationally, terms such as Patient and Public Involvement and Engagement (PPI/E) [13] and Patient Centred Research (PCR) [6] are commonly used.

CCI in health and medical research refers to “the active partnership between researchers, health professionals and those affected by, or who may benefit from, research or healthcare improvement. CCI is about projects being carried out with, or by consumers and community members rather than to, about, or for them.”. [14]p1

The Canadian Institute for Health Research (2020) suggests that CCI builds active and meaningful collaboration with consumers in areas such as governance, priority setting, research and knowledge translation [15]. Harrington and associates (2020) concur and highlight that interaction occurs across all stages of the research process, where research decision making is guided by patient engagement and/or consumer contributions as partners, recognising their specific experiences, values, and expertise [16].

The Women’s Health Research Translation and Impact Network

The context of developing our CCI Strategy sits within AHRA [17], which has identified the advancement of CCI as a key priority and as part of a national systems level initiative. AHRA is comprised of 14 nationally-accredited research translation centres across Australia. Each research translation centre is comprised of acute health services, community health services, primary care, research institutes, universities and government, with the aim of translating research into best practice to improve patient care and health outcomes for the population [17].

The Women’s Health Research, Translation and Impact Network (WHRTN) is a national network, under the auspices of AHRA, established in 2020 [18]. The Network aims to improve the health of women by integrating prevention, healthcare, research, and translation activities as well as advancing and supporting the careers of women in research [18]. There are nine key areas of women’s health prioritised by the Network [18]. These are:

  • Preconception, pregnancy, postpartum and intrapartum health of women and babies

  • Mental health

  • Reproductive health

  • Chronic disease and preventative health, including cancer and heart disease

  • Healthy lifestyle, nutrition, physical activity and the prevention of obesity

  • Violence and abuse

  • Indigenous healthFootnote 1

  • Healthy ageing

  • Sexual health

WHRTN governance

The WHRTN governance comprises one Steering Committee and four Sub-Committees; Indigenous, Workforce Development, CCI, and Research. The case study for this CCI project sits within the WHRTN CCI Sub-Committee.

During the establishment phase of WHRTN in 2020–21, there were three Consumer Advisor/Advocates, six academic staff and two professional staff on the WHRTN CCI Sub-Committee, with an experienced senior Consumer Advisor/Advocate and academic as co-chairs. All Consumer Advisor/Advocates were remunerated in accordance with Monash Partners’ guidelines [19]. During this phase, a key focus of the CCI Sub-Committee was to integrate an equity and inclusion lens across the Network. Thus, input from extensive and diverse consumers and community was sought to develop a national strategy and its subsequent implementation plan.

Consumer Advisor/Advocates in the context of WHRTN

Consumer Advisor/Advocates sit at a senior advisory level on all WHRTN executive committees. This includes the Steering Committee and each Sub-Committee. These Consumer Advisor/Advocates were specifically selected because of their previous memberships on health and/or research committees; their high level knowledge of the Australian health system; their representation of diverse communities; and/or their connection into community networks. Collectively they provide WHRTN with both a lived experience and a voice that is representative of a broad community voice.

WHRTN consults with external Consumer Advisor/Advocates who also bring both their lived experience and strong community connections to our tables, providing WHRTN with an even broader range of community perspectives [20].

Source link