Consumer and Community Involvement Implementation Guide for Research Organisations: Embedding consumer and community involvement in health and medical research into organisational systems

The Consumer and Community Involvement Implementation Guide for Research Organisations is underpinned by national empirical evidence and implementation science to provide a range of evidence-based practical strategies on how to embed consumer and community involvement into research organisational systems. This guide has been developed for entities that that undertake health and medical research including, but not limited to, medical research institutes, academic institutions, and health services.

The Australian community are the funders and beneficiaries of our health care system and health and medical research. They have an inherent right to be involved in the priorities and problems we are trying to solve, through to the solutions, how we implement them and their impact. Funders of health and medical research expect consumers and communities to be involved in the research they fund1. Similarly, an update to the Declaration of Helsinki has declared that meaningful involvement of consumers and communities is an expectation of ethical research involving humans1. Consumers and communities are experts in their own health, life, culture and beliefs and their involvement in research brings many benefits.

Despite recognition of the need for consumer and community involvement (CCI) and related policy mandates, a growing evidence base, and diverse benefits from involving consumers and communities in health and medical research, slow progress has been made towards systems change. To embed and systematise CCI in research organisations, we have undertaken behavioural and implementation research led by Monash Partners Academic Health Science Centre and the Monash Centre for Health Research Implementation (MCHRI) in collaboration with the Australian Health Research Alliance (AHRA), the Western Australian Health Translation Network (WAHTN) and other National Health and Medical Research Council (NHMRC) accredited Research Translation Centres. This work (the Consumer and Community Involvement: Implementation Research for Impact (CCIRI project) was funded by the Medical Research Future Fund (MRFF) and has included extensive stakeholder engagement, consultation, involvement and co-design.

This guide has been informed by data from a national survey and workshops conducted as part of the national stakeholder consultation around revision of the 2016 NHMRC Statement on Consumer and Community Involvement in Health and Medical Research. These data sources, combined with evidence-based frameworks underpin this evidence-based guide that covers ethical, policy, logistical, and structural considerations for implementing CCI at a system level in research organisations.