Governance of Study
The Alliance First Nations Cohort’s decision making happens at 2 levels:
Community Level: by Local Community Advisory Board
Mandate: to decide how the CVCD Alliance study data collected from their community may be used optimally in research and policy development, with the ultimate goal of improving the health of their community membership. This committee will ensure processes are in place to ensure anonymity, privacy and confidentiality of participants. This committee will decide how the community’s contributions to the CVCD Alliance research project should be acknowledged in the dissemination of results. Publications will recognize the contribution of the community and its members as appropriate, and in conformity with confidentiality agreements.
National Level: by National First Nations Working group
Mandate: the First Nations working group has endorsed a model of data sharing which proposes that the data from each community is stored in the local database i.e. with health services on the Reserve or with local PI, and coded (anonymized) data be brought to a central data coordination site at the Population Health Research Institute, McMaster University overseen by Dr. Anand. The CVCD Alliance National Aboriginal Working Group will oversee the storage and use of all blood samples and data. In order to ensure that the participant’s values and interests are fully respected, the National Working Group includes representatives from each community.