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Consumers and community members have a right and a responsibility to be involved in research that may impact their health and wellbeing.
Involving consumers and the community also leads to more meaningful health and medical research.
NSW Regional Health Partners advocates strongly for the involvement of consumers and community members in all stages of health and medical research. We want people with lived experience of health conditions and health services to help shape the conceptualisation, design, implementation and translation of health research. This will ensure research is more relevant and responsive, and results in direct improvements in health outcomes and health care services.
To support consumer and community involvement in research, NSW Regional Health Partners provides access to resources and training programs for both researchers and consumers.
Consumers are also invited to join our consumer register. If you’d like to support research teams and be involved in developing research programs, register your interest here.
Consumers are patients and potential patients, carers, friends and members of the public who have lived experience with different health and medical conditions and interactions with health services. Consumers can also be people who represent the views and interests of a consumer organisation, a community or a wider constituency.
Consumer and community involvement is where consumers and community representatives actively work with researchers and research organisations to help shape decisions about health research priorities, methods, policy and practice. Consumers and community representatives are active and valued members of the research team.
Consumer involvement differs from consumer participation and engagement. Consumer participation is where patients and consumers are enrolled in a research project such as a clinical trial, and data is being collected from or about them as part of the research project.
Consumer engagement is the process of sharing information or raising awareness of a research project with consumers and the community. This is largely a one directional process, where consumers and community are not actively involved in the development, implementation or translation of the research project.
The first step is to understand the end goal of your research and the role you want consumers to play – leaders, partners, experts or advocates.
NSW Regional Health Partners is currently developing a framework to guide consumer involvement processes for our partner organisations. This framework steps researchers through the process of involving consumers from the very start of the research process. This will be available here soon.
It is great you want to actively contribute to research. Here are some ideas to help you get started.
Join a consumer register. Consider joining NSW Regional Health Partners’ consumer register (or other consumer groups relevant to your interests). Through this register, we help link consumers to research teams working in the area where you have lived experience.
Sign up to our newsletter. Join the NSW Regional Health Partners’ mailing list to stay up to date with the latest news, events, and consumer opportunities.
Do some training. NSW Regional Health Partners is developing a suite of consumer training and resources to be launched later this year. In the meantime, Health Consumers NSW offers a free online introductory training program CR101: Introduction to Consumer Representation which is a great place to start.
