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Catalyst dialogue on digital health data governance

Insights from a debate on ways to strengthen privacy and human rights in digital health.

Clemens Gros

Catalyst Dialogue participants
  • Frances Baaba da-Costa Vroom, President, Pan African Health Informatics Association
  • Alexandrine Pirlot de Corbion, Director of Strategy, Privacy International, with inputs from Tom West, Legal Officer, in the bilateral interview
  • 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)
  • Christian Möhlen, former Global Head of Legal Affairs, Kry International

Published by: Global Health Hub Germany and Healthy DEvelopments Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) GmbH, October 2023

Catalyst Dialogue 4 Health Data Governance

Key Learnings

The following suggestions for German policy-makers and parliamentarians surfaced over the course of this 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 cooperation to partner countries to support them in strengthening their legislative frameworks to incorporate good health data governance, working with parliamentarians and civil society, based on Germany’s experience with robust privacy and data protection rights.
  • Work with government agencies mandated to monitor implementation and enforce compliance with health data governance rules, such as the data protection commissions that exist in some countries, to ensure that normative frameworks translate into practical changes on the ground.
  • 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 in their respective contexts.
  • 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.

Why a Catalyst Dialogue on health data governance?

Digital health technologies have the power to accelerate health equity by making health systems stronger, more effective and more responsive to the needs of the populations they serve. These innovations are driven by reliable, high-quality data.

The challenge today is not a shortage of data, but the ability of governments, corporations and individuals to understand and use the available information for the greatest benefit of all, while protecting people’s privacy and rights, and ensuring that scientific and ethical standards are met.

The question has been raised whether the global community needs a framework to ensure the safe and ethical use of health data. Several organisations have called for a common set of rules akin to a ‘social contract’. Such an agreement would need to strike a balance between, on the one hand, the full use of data for development and on the other hand the protection of security, privacy, and human rights. It would likewise need to ensure a balance between use of data for commercial interests and the interest of the public good. Transform Health, a global civil society coalition, has proposed such a framework: the Health Data Governance Principles.

To inform the German government’s position on whether one shared global framework would be necessary – and what general measures could be taken to strengthen health data governance, the Global Health Hub Germany and Healthy DEvelopments convened a high-level ‘Catalyst Dialogue‘. Co-sponsored by the German Federal Ministries of Health and of Economic Cooperation and Development, it brought together four
distinguished representatives of academia, development cooperation, foundations and the private sector. Participants initially took part in individual interviews and then gathered for a virtual discussion.

The objective of this paper is to share the diverse perspectives of the Catalyst Dialogue participants on this issue. Rather than presenting a consensual statement, the document closely follows the discourse as it unfolded. It illustrates policy-relevant positions and presents opposing and sometimes even contradictory perspectives, all of which promise to enrich Germany’s policy dialogue on health data governance.

This brief is structured as follows: It first summarises the panellists’ views on how health data are currently governed and why change might be needed. A short synopsis of the proposal for a new health
data governance framework – the Health Data Governance Principles – is provided.

The paper then traces the discussion and presents arguments for and against a global framework and reflections on what measures need to be taken to strengthen health data governance. The final section
outlines steps that Germany could take to support partners’ efforts in this important area.

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