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 |