Top tips for engaging your community
Everyone has a role to play in developing the very best health system possible. Our community includes the Government, industry, researchers and health professionals, who are all well placed to engage in the decision-making process. Patients and their families are a central part of this community, but do not always have the resources or platform to engage in the same way as other stakeholders. Here are three basic principles to guide community engagement efforts.
1. The earlier the better
In research, health policy and health services, patients and their families are often engaged in decision-making at the end of a process where they are asked to provide feedback on something that has already been developed or decided. This can leave them feeling as though their participation was tokenistic and didn’t really make a difference.
2. Location matters
The community are often asked to engage with decision-makers in an environment that is familiar to researchers and health professionals, but not necessarily familiar to patients and the community. This might be asking a patient representative to join a committee or asking a group of patients to review a research grant.
There is a role for patient representatives at all levels, but if we really want to engage with the community, we need to take the time to engage with them in their own environment within the community, listen to their experience and respond to their needs through our research, policy and health services.
3. Value patients and their families as experts
The most important part of engaging patients and their families is valuing their experience as a form of expertise. Support and encouragement is needed for the community to engage in research and policy decision-making, and we need to recognise that the insights they bring are unique.
The expertise that patients bring is the very fact that they have lived through the symptoms before they were diagnosed, been through the treatment, navigated the health system, and continue to deal with the side-effects.
If we recognise this value, we can then focus on creating a supportive environment for patient and their families to share their experience so that those who make decisions can better understand the context in which they are making those decisions