Policy Brief: A new global framework on health data governance?

16. October 2023 I  Digital Health  I by : Eva Genzmer

At a roundtable on the sidelines of the World Health Summit 2023, Healthy DEvelopments and the Global Health Hub launched a policy brief presenting the outcomes of their fourth Catalyst Dialogue on digital health data governance. 

Why debate health data governance?

The question has been raised whether the global community needs a framework to ensure the safe and ethical use of health data. This framework must strike a balance between making full use of individuals’ health data for development and protecting security, privacy and human rights. It also needs to balance the use of data for commercial and public interests. Transform Health, a global coalition of civil society organisations, has proposed such a framework: the Health Data Governance Principles.

Who are the experts and what is their point of view?

The policy brief traces the arguments exchanged in the course of individual interviews and a virtual debate among four experts from academia, international development, charitable foundations and the private sector:

Alexandrine Pirlot de Corbion, Director of Strategy, Privacy International: ‘Germany has contributed a lot to the work on the right to privacy and digital health within the UN and the work of the Human Rights Council. Playing a role in the global arena to push forward this rights-based approach to the use of digital health is really, really important.’

Christian Möhlen, former Global Head of Legal Affairs, Kry International: ‘A common normative framework and standardisation would have huge merits from a public health perspective. It enables competition from smaller companies and organisations and ultimately strengthens quality.’

Christoph Benn, Director for Global Health Diplomacy, Joep Lange Institute; President, Transform Health; Board Chair, The International Digital Health and AI Research Collaborative (I-DAIR): ‘Google, Amazon and Microsoft have access to the data of billions of people. Although these companies are not health organisations, they invest in AI for health, driven by commercial interests that are very, very powerful. The challenge is how to regulate this.’

Frances Baaba da-Costa Vroom, President, Pan African Health Informatics Association: ‘There must be a mind shift in the general population. We need advocacy and education to allow people to understand what their data are going to be used for. I must feel that I have the right and I have the power to ask those questions.’

Which recommendations emerged from the debate?

The following suggestions for German policymakers and parliamentarians surfaced over the course of the Catalyst Dialogue:

  • Champion a rights-based approach to health data governance globally that:
    • Enables data sharing for the benefit of the individual and for public health, while safeguarding the right to privacy.
    • Promotes transparency and equity in data collection, management and use.
    • Prevents and actively works against bias and discrimination in data and in algorithms that process them.
    • Empowers individuals to know their rights, own their data and decide about their use while ensuring that the burden of accountability does not fall on them but remains with the respective duty bearer.
  • Offer technical and financial support to partner countries in strengthening their legislative frameworks and incorporating good health data governance. Based on Germany’s experience with robust privacy and data protection rights, partners should work with parliamentarians and civil society.
  • Work with government agencies mandated to monitor implementation and enforce compliance with health data governance rules to ensure that normative frameworks translate into practical changes on the ground. Such agencies include the data protection commissions that exist in some countries.
  • Ensure good health data governance in German-supported projects by requiring organisations that operate with German funding to implement a rights-based and human-centred approach and to adhere to the existing legal frameworks on privacy and human rights.
  • Nurture a vibrant and diverse landscape of civil society actors to hold governments accountable and to advocate for a rights-based approach to digital health.

Read full policy brief on health data governance

Read full policy brief in German

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