Table 3 Identified mechanisms for promoting CAG involvement and partnership, and lessons learned

1. Careful selection of CAG members

A good mix of expertise, advocacy and lived experience

Firm commitment to working together—experienced in working in community organisations, and with government bodies where members learnt the skills required to achieve mutual aims

Health equity focused

The ability to give voice to consumer concerns; to communicate successfully with other professionals

CAG members empowered to set program of work, as a CAG and individually where special interests lay

2. Creating a receptive environment

Use of democratic dialogue

Independent chair who kept to time and structured meetings

Set opportunities for interaction – regular defined meeting schedule; by e-mail between meetings

CAG Chair and Project Management Team support

Carefully selected co-ordinator from Project Team

Consulted on approach to be taken before decisions made

Flexibility in the levels and approaches of involvement

Engaged in multiple ways, utilising individuals’ strengths

Well prepared and informative presentations from Project Team

Well-presented updates from Flagships

Given time and opportunity to develop strong and trusting relationships

Value seen to be placed on CAG contributions

Activities register to record activities, enable identification of outcomes of involvement

Built in reward mechanisms such honoraria, enabling workshop development, posters at conferences, presentations etc.

3. Leadership commitment

Commitment to and resources for CAG

Leadership attended and actively involved in meetings

CAG members attended and actively contributed to key Alliance external and visitor meetings and events

Regular updates on the Program and funding

Limitations, challenges and lessons learned

No dissenting voice present

No consideration of a more diverse membership including men, youth, members from culturally diverse backgrounds including Aboriginal and Torres Strait Islander people, and from rural and regional areas to provide additional aspects and points of view

The need to establish credibility and overcome scepticism from some professionals; that our credentials and comments are valid

Co-ordinators had different backgrounds (genetic counsellor, communications, then researcher) with unknown implications for the group

No induction to the CAG for new members

No mechanism to check impact and involvement across research activities

No formal evaluation undertaken of the CAG and its place in the Alliance