The Centre for Community Driven Research (CCDR) is a non-profit organisation committed to supporting meaningful community engagement in health and the medical research sector. At CCDR community includes the government, clinicians, industry, researchers, patient communities and the general population. Our role is to facilitate connection between each stakeholder group with a particular focus on supporting patient communities and the general population to engage in the decision-making process.
Each and every person has a role to play in how our health system is shaped so our approach is less about ‘us and them’ and more about what we can do as a community that values the experience of patients and their families, the expertise of clinicians and researchers, the contribution of industry and the role of the government.
Engagement in health policy
Decisions are made every day that impact the way patients are cared for in Australia and the treatments, devices and services that are available to them.
Understandably, many decisions are made in relation to economic considerations and the clinical effectiveness of a treatment within a specific population.
What is often missing is an assessment of the value that the community places on access to affordable and timely treatments and services, and the values that they would like to see included in the decision-making process. It is this kind of input that provides the context in which decisions are made, and that insight can only come from those who have experienced an illness or condition.
This is where your feedback as a patient or community member can inform the decisions that will make a difference to other patients in the future, whether it is in relation to policy decisions, health program development or informing new research ideas.
Engagement in research policy
Each type of research plays an important part in informing how our health system works, and what diagnostic tools and treatment options are available to us. Dedicated researchers help to find the answers to the questions we have about disease and its impact on us as individuals and as a community. However, research can only happen because of the generosity of patients in the community who volunteer to participate in studies.
Research starts and ends with patients, and that is why it is important for researchers to listen to the needs of their patient community and develop research projects to address the most urgent problems faced by patients.