The reason why we debate the governance of health data?
The issue has been posed whether the global community is in need of an agreement to ensure the security and integrity of health information. The framework should find a way to balance making the most of people health information for development while protecting security, privacy, and rights of the human. Also, it should ensure that data is used for public and commercial purposes. Transform Health, a global coalition of civil societies has proposed framework called The Health Data Governance Principles.
What are experts and what’s their opinion?
The policy brief describes the arguments that are exchanged during individual interviews as well as virtual discussions between four academic experts and international development, as well as charitable foundations, and the private sector
Alexandrine Pirlot de Corbion, Director of Strategy, Privacy International: ‘Germany has been a major contributor in the field of rights to privacy as well as digital health at the UN as well as the activities on behalf of the Human Rights Council. Participating in the international arena to promote this rights-based method of using of health data in digital form is vital.
Christian Mohlen, former Global Legal Affairs Head, Kry International: ‘A common normative framework and standardisation could bring enormous benefits from a health standpoint. It allows competition from smaller businesses and organizations and in the end improves the quality .’
Christoph Benn, Director for Global Health Diplomacy, Joep Lange Institute and President of Transform Health; Board Chair, The International Digital Health and AI Research Collaborative (I-DAIR)”Google, Amazon and Microsoft have access to the information of billions of individuals. While they aren’t health institutions, they invest in AI for health. They are in the name of commercial interests which are extremely, very powerful. The issue is regulating these companies.
Frances Baaba da Costa Vroom, President of the Pan African Health Informatics Association”There needs to be a change in mindset within people in general. We need to advocate and educate so that people can understand what their personal data are going to be employed for. I have to believe that I am entitled and authority to ask these questions. .’
What suggestions emerged from the discussion?
These suggestions to German politicians and lawmakers were offered during the Catalyst Dialogue:
- Advocate for a rights-based approach to the governance of health data globally that:
- Allows sharing of data to the benefit of the individual as well as for the public’s health but also protects the privacy rights of individuals..
- Promots transparency and equity when it comes to data collection and management as well as use.
- Actively works against discrimination and bias in data and algorithms used to process them.
- empowers individuals to understand their rights, control their personal data and make decisions about their use. It also ensures that the responsibility for accountability doesn’t fall on them but falls on the person who is responsible.
- Provide technical and financial assistance to partner nations to strengthen their legislative structures and incorporating sound information governance. Based on the experience of Germany with solid privacy and protection of data rights, the partners must collaborate with civil society and parliamentarians.
- Collaborate with the government agencies mandated by law to oversee implementation and ensure the compliance with the rules governing health data governance in order to make sure that the normative frameworks are translated into actual modifications on the ground. They include commissions on data protection, which are in place in some countries.
- Make sure that health data is properly governance for German-funded projectsby demanding that organizations operating through German funding to adopt a human-centered and rights-based approach and to comply with the legal frameworks in place for data privacy as well as human rights.
- Develop an ever-changing and varied landscape of civil society actors in order to ensure accountability for governments and push for an approach based on rights to digital health.