1.1 The COVID-19 pandemic is increasing volumes of health and health-related data being generated worldwide and accelerating the trend towards digitalization in health. The increased demand for health data[1] and statistics[2], has exposed long standing data governance issues, including issues of intellectual property rights, inequalities in data access and capacity, availability and sharing (including cross border due to differing data protection, regulations and interpretation), use, reuse, storage and bias in data analytics with possible misuse. Persistent data gaps and fragmented approaches to governance of health data in different contexts are a major roadblock to the use of data as a global public good, and have contributed to the lack of cross-pollination of health research and information systems data. Health data is both a strategic asset and a public good, the management of which requires cooperation and leadership at global level and in countries to address fragmentation.
1.2 High quality health data is crucial to inform policies, budgets and plans for improved health access and impact and accelerating progress towards the 2030 Sustainable Development Goals. Health data must be collected, shared and stored in line with internationally approved standards and used ethically and equitably. A new global consensus on health data governance, underpinned by a core set of guiding principles, is needed to secure health data as a global public good, and to identify good data governance practices for better health, especially for communities left behind.
1.3 The Health Data Governance Summit has reinforced the need for cooperation and dialogue to secure health data for and as a global public good and align support for identified good practices and principles in health data governance. Establishing health data as a global public good, adhering to international standards, and governed by good practices will help build trust to maximize benefits and minimize harms. A data governance framework should support and strengthen individuals and communities to have control over, and benefit from, their own health data. It can do so by clarifying and strengthening legal protections against the misuse or abuse of health-related data and engaging with communities to co-create health data stewardship and accountability mechanisms.
1.4 The Health Data Governance Summit builds on the 74th World Health Assembly (WHA74), the G7 June 2021 communiques, the UN Secretary General’s data strategy, the World Bank’s 2021 Development Report, the 52nd UN Economic and Social Council Statistical Commission. The Health Data Collaborative, the Partnership in Statistics (PARIS21) and others.
In convening the Health Data Governance Summit, WHO:
- Acknowledges that data to improve health outcomes will come from multiple sources and that health data needs to be integrated within broader multi sectoral data governance practices, to realise synergies, uncover new insights, or develop new applications.
- Acknowledges the power of data to change lives and transform communities. Understanding and acting on health data can enable better health and wellbeing, ensure universal health coverage and provide protection from emergencies.
- Commits to facilitating this common vision through the collective leadership and resources of a multi-sectoral and multi stakeholder data community.
- Supports the need for global collaboration and dialogue on heath data across all sectors, ensuring shared learning and practices.
- Calls on Member States and all stakeholders, including Civil Society and Private Sector, to work together to develop and adopt a common framework and good data governance practices underpinned by a globally unifying set of principles that build on or adapt WHO’s data principles. These should enable health data to be recognised as a global public good and include activities to manage and share health data that are:
Effective: the use of health data should have a clear and transparent aim to improve public health. Health data sharing should be timely and as open, transparent and inclusive as is possible, build on existing good practices, adopt common standards to encourage interoperability and reduce unnecessary duplication. Any approach to health data use should improve the quality and reliability / integrity of the use of data and apply the FAIR principles to ensure data is findable, available, interoperable and reusable.
Ethical: the use of health data and any data governance solution must uphold the highest standards of data protection and respect for human rights, balancing the trade-offs between individual rights to privacy with the collective benefits of open and transparent health data.
Equitable: the use of health data should recognise and balance the needs of all stakeholders. This requires equitable and inclusive approaches to support data collection, generation, access, use and a fair sharing of the benefits that arise from the use of data. The people and communities about whom data is gathered, and who are affected by its use should be actively involved in creating an equitable governance model to promote the achievement of public health goals as outlined in the UNSDG Human Rights Based Approach.