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Table 2 Key activity areas of Community Advisory Group

From: Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective

In what activity

How involved

Governance

Selection of Flagships (Horizon One); design of patient test report (Demonstration project); review of research

Consent processes

Participated in discussions on dynamic consent, design and content of clinical consent, Participant Information Sheet and Consent Form

Communication, visual identity and website

Provide contacts and access to patient networks for real stories that were the basis of media stories, provide speakers, helped with website design and provided examples, website content, feedback on brand identity

Patient portal and evaluation

Advised and reviewed patient surveys and return rates, portal content during development together with access and navigation, patient-facing materials and information (visual media, glossary, navigate your results section)

Information management

System planning, test tracking for patient-facing portal, incremental levels of information while test results pending

Laboratory requirements

Stressed right from start importance of use of accredited laboratories to provide genomic testing

Tools for patient experience and quality of life measures

Actively participated in discussions on tools, addressed cultural/language diversity; design, data collection and analysis of evaluation cycle

Pre-emptive additional findings study

One designated CAG member was active member of study [10]

Storage and sharing of data, databases

Actively participated in discussions, workshop

CAG Communication Plan, the Patient Guide

Co-design of materials

Sharing role with Victorian Government Department of Health and Human Services

Representative attended meetings as non-member

Implementation plan

Consultation on and input into plan [18]

Workshop to inform/upskill patient advocates

Co-design and participation in workshop

Financial and strategic planning

Lobbying state government, input into priorities for funding business case

Presentations on the role of the CAG at external meetings

Direct involvement of members

Direct interactions with Alliance members at annual meetings

Direct involvement of members

Interactions with visitors and external experts

Direct involvement of members

Participation in consultations with external experts

Direct involvement of members

Final two-day symposium

Direct involvement of members