Consumer Partnerships
Consumer partnership in health and medical research is an approach in which researchers and/or healthcare providers and consumer organisations actively and meaningfully work together to design and conduct research or healthcare improvement projects. Consumer partnerships usually refer to a broad collaboration between researchers and consumer organisations or groups and may involve one or more consumer partners who work to guide a research or project. Sometimes consumer partnerships are defined at a more personal level, where consumers form partnerships with researchers or health professionals to work in an equal relationship but independent of an organisation or group.
A consumer partnership was established to prepare and undertake a study on genetic mutations linked to rare diseases. For this research, consumers, including people with lived experience and caregivers, partnered with researchers to ensure the research would address priorities relevant to impacted communities. Consumers collaborated with researchers to help identify the issues and outcomes that were most important, ensuring the research focused on meaningful aspects of the diseases. The consumers co-produced easy to read information that explained the research and its intended impacts for others within and outside their community. The consumer partnership also resulted in a collaborative presentation to a rare diseases advocacy group who lobbied the government for more dedicated research funding and improved data sharing processes.
To conduct a project about gestational diabetes, a research group approached a diabetes consumer organisation to be involved as a partner in the design and development of a research project grant aimed to reduce its incidence. The research group and consumer organisation co-developed the project and grant proposal and the diabetes consumer organisation was a named partner with a budget to support their genuine engagement if the grant was funded. The grant was successful, and several consumer representatives from the diabetes consumer organisation sat on the project steering committee, diversity and inclusion working group, data and outcome evaluation project meetings, and the communications and marketing committee.