Calvary Mater Newcastle is committed to building and maintaining relationships that strengthen the links between the hospital and the communities it serves. The hospital has developed a Consumer and Community Engagement Framework (2018-2021) in partnership with our Community Advisory Council (CAC). The framework provides an overarching structure to guide and support the hospital’s engagement with consumers and the community. The aim of the framework is to improve community health outcomes by providing services that are reflective of each person’s individual needs and those of the wider population.
Our research priorities are:
- To increase awareness of the merits of consumer participation
- To promote the benefits of integrating research into clinical care
- To involve consumers in research activities and strategic planning that will drive future research priorities
- To train consumers in reviewing research and contribute to research development
‘Consumers’ are defined as people who have a lived experience of a health issue. They might receive health care or advice, or otherwise use health care services. They include patients, their friends, families, carers and members of the general public. The terminology used for consumer involvement in research can be interchangeable with terms like ‘consultation’, ‘participation’, ‘engagement’, ‘partnership’, ‘co-production’ and ‘collaboration’.
1. Plan for consumer involvement
Consumer involvement needs to be planned for all stages of guideline development and with the active participation of consumers in the planning process.
- When and how consumer involvement will take place
- The recruitment of consumers for the guideline development group and other planned activities
- The processes and policies for supporting consumer involvement
- The training needs of consumers, developers and organisations
- The methods for supporting consumer involvement
- Ensuring cultural awareness/competence for Aboriginal and Torres Strait Islanders
2. Consider the goals of consumer involvement at each stage of development
You need to be explicit about your goals for consumer involvement and engage the right people and the right people choose you.
3. Decide what type of consumer expertise is needed
4. Decide on appropriate levels of engagement
5. Identify and recruit consumers
Useful channels for approaching consumers include:
- Contacting consumer groups and networks (e.g. Consumers Health Forum, Consumer and Community Health Research Network, National Toxics Network)
- Advertising in consumer information portals (e.g. Healthdirect)
- Contacting condition groups or organisations (e.g. Cancer Voices Australia)
6. Establish expectations
7. Ensure effective communication with consumers
The use of medical terminology or technical jargon can be a barrier to involvement and you can counter this by ensuring that the language used to communicate with consumers is presented in a readable way and adapted to the appropriate level of technical knowledge.
8. Support effective consumer involvement
9. Report consumer involvement
10. Acknowledge consumer contributions
The following standards apply to the consumer involvement module:
- Address a health issue of importance
- Be composed of an appropriate mix of expertise and experience, including relevant end users
- Be developed around explicitly defined clinical or public health questions
- Address outcomes that are relevant to the guideline’s expected end users
- Clearly define the outcomes considered to be important to the person/s who will be affected by the decision, and prioritise these outcomes.
- Consider the body of evidence for each outcome (including the quality of that evidence) and other factors that influence the process of making recommendations including benefits and harms, values and preferences, resource use and acceptability.
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If you are interested in becoming a Calvary Mater Newcastle consumer representative for research, sign up to our Consumer Register via our Calvary Mater Newcastle website.