Boards & Councils
IDAGC
About IDERHA’s developing consensus policy recommendations work (Work Package 6) and the IDAGC.
The Integrated Data Access Governance Council (IDAGC) is being established to guide and advise the activities of the IDERHA work package focused on advancing policy development in the broader environment (Work Package 6). The work package’s approach will focus on creating multi-stakeholder alignment to address critical policies gaps to advance the broader acceptance and use of high-quality and reliable heterogeneous health data research. The IDAGC will provide guidance to the WP6 Tasks leaders.
The recommendations are intended to accelerate policy development to meet the current and future advances in the digitisation of health data, research methods, and health care innovations. The consensus policy recommendations will focus on:
- Ethical and legal governance of heterogeneous health data access and sharing to enable multi-stakeholder research, and
- Criteria for the evaluation of research derived from heterogeneous health data for regulatory, Health Technology Assessment (HTA) and payor for decision-making associated with medicines and medical devices.
Establishing the IDAGC
The Integrated Data Access Governance Council (IDAGC) membership is intended to include individuals able to provide important insights and perspectives to guide the team’s work to build consensus on recommendations on policies to enable the appropriate access and use of heterogenous health care data to support product development and health research.
To achieve this goal, the members need to bring their individual content expertise AND the overall composition of the IDAGC should ensure that the policy consensus development is balanced with a clear understanding of the potential implications/barriers for policy acceptance and adoption. The IDAGC will include approximately 12 senior leaders and experts who represent the perspectives of key stakeholder groups (e.g., Health Authorities, HTA organizations, patients, health systems, professionals, academia, and industry).
The membership will include individuals from organizations within the IDERHA consortium and individual experts drawn from outside the consortium. In July 2023, the IDAGC members selected from the partners in the IDERHA Consortium convened the first meeting. The IDAGC is co-chaired by the Danish Medicines Agency/DKMA and the European Cancer Patients Coalition (ECPC).
A charter for IDAGC members can be downloaded as a PDF, including a background on the project, the role of the IDAGC in it, its tasks and repsonsibilities, an NDA, etc.
