There is global consensus to urgently address maternal obesity[1, 2]. In the setting of increasing weight at a global population level, younger women between the reproductive ages of 20-40 years represent the population group at highest risk of obesity development. Increased weight prior to pregnancy, excess gestational weight gain and postpartum weight retention are significant and independent contributors to rising maternal obesity[4-6]. Maternal obesity is evident across low, middle and high-income countries, however obesity prevalence is growing faster among populations experiencing socio-economic challenges[8, 9]. Maternal obesity is associated with adverse health outcomes in pregnancy and increased risk of chronic disease in women, including coronary heart disease, stroke, type 2 diabetes, as well as asthma, poorer cognition, neurodevelopmental disorders and obesity development in the child[3, 4, 10]. Long-term lifestyle and pharmacological treatment of obesity are largely ineffective and have not curbed associated adverse health outcomes[11, 12].
The Health in Preconception, Pregnancy and Postpartum (HiPPP) Global Alliance (the Alliance) was formed in 2018 in response to the impact of overweight and obesity among women before, during and after pregnancy[11, 13]. The Alliance comprises international, multidisciplinary, expert stakeholders across consumer, community, government, private and public health services, workplaces and primary care, representing leading international academic bodies[11, 13, 14]. Our agreed aims include: 1) to establish priorities for preconception, including inter-conception (the time between pregnancies), pregnancy and postpartum healthy lifestyle and care to prevent maternal obesity and related pregnancy and long-term complications (priorities were developed using a modified Delphi and Nominal Group Technique); 2) to review quality, identify gaps and update evidence-based guidelines for weight and lifestyle management in HiPPP; 3) to co-develop workforce development priorities and strategies; 4) to establish a HiPPP international early- and mid-career network; and 5) to co-develop consumer involvement priorities for HiPPP and maternal obesity prevention[11, 13]. A consumer (also referred to as a member of the public, patient and stakeholder in other countries) is historically the term used widely throughout Australia as reflected in title of National Health and Medical Research Council’s Statement on Consumer and Community Involvement (2016) and has become the term that people relate to in Australia to describe any person affected by the research, such as those with a lived experience of a health condition and/or a recipient of research knowledge/health and community services[15, 16]. There was consensus that the priorities for HiPPP and maternal obesity prevention would be co-developed with consumers. In this paper we focus on the development of the HiPPP Consumer and community involvement (CCI) framework to ensure that people who will be affected by and/or who may benefit from the research have opportunity to be involved meaningfully throughout the process.
Research by our group and others demonstrates that low-intensity lifestyle interventions in reproductive aged women, including in preconception, pregnancy and postpartum, prevents weight gain[17-19]. Yet without implementation research to drive evidence into practice, this knowledge remains siloed, failing in scale up and delivery of health impact. New knowledge is vital about “how” to implement systems-wide, evidence-based strategies. This new knowledge cannot be generated and translated effectively without rigorous consumer and community involvement to ensure interventions are relevant and feasible for those using them. Yet, significant barriers impede women participating in, and partnering with researchers, during key obesity prevention windows in preconception, pregnancy and postpartum life stages[20, 21]. These barriers include: 1) the transient nature of perinatal life stages with limited timeframes; 2) the normative nature of perinatal life stages, where women are not viewed as “patients” and not always aware of opportunities to be involved in health and medical research; and 3) the challenges of dealing with a new baby which limit self care and availability. To address these challenges, the HiPPP Alliance prioritised the development of a CCI framework designed to overcome some of these barriers and to enable consumer participation and partnerships so as to establish not only what “what works” but also “what translates” into meaningful health outcomes for women and the next generation.
The involvement of consumers and community in health research is not new. Consumer and community involvement has increased significantly over the past decade since being introduced in the United Kingdom (UK) 20 years ago, and is now a policy directive in countries including Australia, the UK, Canada, and the United States. These countries apply different nomenclature such as patient engagement (US) and patient-researcher engagement (CA), patient and public involvement (UK) or consumer and community involvement (AUS). The aim of CCI is to improve the quality, direction, relevance and impact of health and medical research as well as help to prioritise resources and activities[24-26].
Consumer and community involvement in research refers to the active partnership between researchers and those affected by the research, in contrast to having research conducted for them[15, 16, 25, 27]. As well as consumers, CCI may include relevant communities, such as organisations, services and settings (e.g., community health centres, hospitals, cultural groups) that may play a role in informing the solution. In this paper, we focus on the work conducted with researchers and consumers. Consumer and community involvement can take many forms during all stages of research and translation, from that of participant to partner. As research partners, consumers can be involved across the research continuum from identifying the problem, priority setting, attracting funding to governance, research co-design, interpretation of data and publication and presentation of the findings[15, 25]. In line with the growing acceptance of the imperative to embed CCI in research and translation initiatives, recent efforts have focused on: 1) conceptualising CCI ; 2) identifying the guiding principles needed for successful CCI and researcher interactions; and 3) evaluating the impact of CCI. More recently, the UK National Institute for Health Research (NIHR) reviewed CCI (referred to as Patient and Public Involvement in the UK) progress over the past decade. This work highlighted that despite meaningful advances, including increases in infrastructure to support CCI, there is still a need for the field to mature from ‘tokenism’ to meaningful involvement of consumers and researchers. A key finding was a lack of consistent reporting of CCI in research initiatives, limiting our understanding of “what works” and preventing translation of “what we know” about CCI in research and translation to “what we do”.
In this paper we respond to the NIHR review recommendation by reporting on the development of the international HiPPP CCI Framework. Given the need to adapt local contexts and the evolving nature of the field, we focus on progress to date and acknowledge that this work will continue to evolve in response to the needs of consumers, researchers, health professionals and other stakeholders as well as the HiPPP objectives and opportunities.