Consumers
Consumers can be defined as patients and potential patients, carers, and people who use health care services. Consumers can also be people who represent the views and interests of a consumer organisation, a community or a wider constituency.
What is consumer and community involvement?
Involvement is where consumers and community actively work with researchers or research organisations to help shape decisions about health research.
This active partnership is important to ensure decision making is with or by consumers, rather than ‘to’, ‘about’ or ‘for’ consumers.
How can I find out more?
We have developed a Consumer Information Pack. This Pack describes what it means to be involved in health research and the many ways you can get involved.
It can be accessed here.
Consumer involvement stories
Click here to listen to Melinda Cruz who is the mother of three boys who were born premature, and how from this experience she started the Miracle Babies Foundation. Melinda describes the passion and dedication she feels when working with researchers who really want to change the lives of families, and how the foundation works regularly with them to achieve this. One shared goal Melinda discusses is the opportunity to raise research awareness and change community culture, so that when parents enter a hospital they can openly ask ‘Are there any clinical trials that we can join?’.
Click here to listen to Caleb Ferguson, a stroke researcher, talk about how he has partnered with stroke survivors for more than a decade and how together they have identified research priorities and designed studies to find answers. Caleb discusses the importance of involving consumers in the growing digital health research arena. He says ‘consumers are engaged but as researchers we need to listen more to the feedback’ and understand that a one-size fits all approach maybe not always be the best option, and by working together we can design more inclusive research strategies.
Click here to listen to Lee Hunt (consumer advocate) and Jingjing He (PhD researcher) talk about breast cancer research, and how they began to work together to design a research study. Both reflect upon the importance of starting this relationship early in the project. Jing describes how involving Lee shifted the focus of her study to build in more about the patient’s experience of cancer, and how this enabled the study to be conducted much more effectively and efficiently in the real-world clinical setting.
Click here to listen to Zy Phillips who has a child with muscular dystrophy, talk about how he contributes to clinical trials via a consumer group. Zy explains how he helps researchers design studies that work around the busy lives of families and their needs.
Click here to listen to Jenny Lam who is a lung health researcher, discuss how her team regularly involves the community in the design and conduct of research projects. Jenny explains how sometimes researchers make assumptions about participant engagement in clinical trials but comments "if we don't ask consumers and the community how can we know?".
Click here to listen to Mitch Messer who lives with cystic fibrosis, talking about his experience as a clinical trial participant, and also about working in partnership with researchers as a consumer. Mitch shares how he helps researchers understand what matters most to patients, and how consumers and researchers can work together to achieve these goals.
What are clinical trials?
Clinical trials are research studies that test ways to improve healthcare. These studies help find better ways to treat or prevent disease.
More and more, researchers are using the expertise of consumers to improve their clinical trials.
Here is a short video to explain more about clinical trials.
If you would like to use this video you can download a copy by clicking here.
This resource is available in multi-languages below.
What is randomisation?
Clinical trials can be designed in many different ways but the most common approach is randomised controlled trials.
Randomised controlled trials may compare a new treatment with an old one. Or, it may compare all available treatments for a particular disease or condition to find out which work best.
Here is a short video to explain the process of randomisation in a clinical trial.
If you would like to use this video you can download a copy by clicking here.