“To gain the most out of consumer participation it is important to cultivate an environment where consumers feel valued and equal members with others in the organisation. To achieve success, all members of the team are respected and engaged equally.”
Consumer Involvement Toolkit, Cancer Australia, 2015
First: Make a Plan
The plan does not have to be complex. It can be a simple guide that includes:
- A Mission or Vision Statement – one or two sentences saying what you want to achieve.
- Why, where, when and how you will engage consumer representatives with cognitive disabilities within your organisation. This could include:
- boards and/or committees of management;
- policy development, planning;
- working parties, focus groups and advisory groups;
- research, evaluation and more.
- Activities and issues to be addressed.
- Representative information. This could include how to identify and find consumer representatives, number of representatives, experience required, time requirements, their needs and expectations, etc.
- Deciding how you will reimburse expenses and provide sitting fees for representatives.
- Define the roles and responsibilities of the consumer representatives and your organisation.
- Identifying processes required to remove the barriers to participation.
- Providing accessible information, resources and training to help representatives prepare.
- Providing information, resources and training for staff and other committee members.
- Developing an accessible evaluation process which includes input and feedback from both the consumer representatives and your organisation.
We recommend recruiting at least two consumers for a committee or working group rather than one. This may help prevent feelings of isolation and powerlessness and provide mutual support. Ensure at least one is present if the other is sick and allow for some succession planning.
Next: Embed the Culture
People with cognitive disabilities have valuable and diverse abilities, life experience and expertise to contribute. Your organisation should work to develop and embed a culture which ensures:
- Opinions are actively sought, listened to and considered.
- They are respected and valued for their contribution.
- Equality: everyone is seen as equals.
- Consumer representatives and the organisation have the opportunity to learn from each other’s knowledge and experience.
- Communication between the organisation and the representatives happens in a way that builds knowledge, understanding and mutual respect.
Adapted from: Cancer Australia and Cancer Voices Australia, 2011, National Framework for Consumer Involvement in Cancer Control
Next Page: Chapter 4 – Identify and Remove Barriers