On 23rd March, Zahara Ndagire from Uganda went to her local health facility to request her electronic health records. She was denied. On 24th February, Séri Joseph Bogou from Ivory Coast requested his records from his local hospital and was also denied. That same month Shannon Thom from Canada also tried to access her electronic health records. She was also unsuccessful.
Across the world, the level of access and control people have over their electronic health data is limited by the lack of clarity by patients and providers of their rights and responsibilities in relation to people’s health information. This leaves people feeling confused and concerned over who has their health data, how it is being used and for what purpose. Ultimately this risks eroding trust between people and health providers. As Zahara says:
“I realised that I really know very little about where my data is held and how it is used…I have no trust, I am very concerned about how my data is being managed”.
Grace Njeru, from Kenya was not able to get hold of her health data as she was told that it is not held in one place. “The Pharmacist told me that you can’t get all your health records, if it’s the lab you need to go to the lab, if it’s consultation, you need to go to consultation. (…). My experience was confusing, when I went to the receptionist, he didn’t know what I was talking about; I think I was the first person to ever ask for health records in that hospital.”
Shannon Thom from Canada had a similar experience: “My electronic health record is broken into very specific types of information held by six different bodies. In order to access these records, I need to [provide] the types of tests and the dates (…) which was difficult to know without access to the health records. So without the records I couldn’t access my health data.”
According to some estimates, 30% of all data produced is generated by the healthcare industry. Yet most people remain unaware of how this data is collected, who is collecting it, where it is being stored, what it is being used for, and why. Health data remains poorly regulated at national level.
The current lack of agreed regulatory standards to govern the collection and use of health data creates uncertainty in the way health data can be used within countries and across borders, and means that data is not being maximised for public good purposes (e.g. for research, innovation, health planning). This risks leaving many people behind when it comes to developing new medicines, technologies or planning for the provision of health services to the wider population.
Between 21st and 30th May, Ministers of Health from around the world will gather in Geneva, Switzerland for this year’s World Health Assembly (WHA) to discuss important health challenges and to set the priorities for the World Health Organisation. Transform Health and its partners are calling on governments to prioritise the development of a global health data governance framework that would form the basis for national legislation on how health data is collected, managed, used, stored and disposed of.
“Transform Health has been a strong advocate for the need for a global set of standards on health data governance, which we feel needs to be considered as more than just a sub-category of data governance. Health data lies at the intersection of personal privacy and security, and the protection and well being of the population. Therefore the need to ensure a regulatory system regime that people know about and trust, and where institutions can have public approval and support to access and use our most intimate personal data for the public good, while ensuring our rights and privacy are protected.” says Mathilde Froslund, Executive Director of Transform Health.
These standards need to be underpinned by equity and human rights-based principles such as the Health Data Governance Principles, which have already been endorsed by over 140 organisations and governments, and developed through an inclusive process, including with civil society and communities. Such standards, articulated within a global health data governance framework, would inform and strengthen national legislation and also govern health data sharing across countries. This would lead to stronger and more equitable health systems, improved health emergency and pandemic response, improved research and innovation and would advance UHC goals. Importantly, this would improve public trust in health data systems, which is critical to foster data use for public good.
Earlier this year, Transform Health launched the My Data Our Health, a global campaign led by community based organisations, to raise awareness and galvanise action on the issue of health data, and to encourage a public and political conversation around questions of health data collection and use.
About Transform Health
Transform Health is a global coalition of more than 130 organisations advocating for the equitable digital transformation of health systems, to achieve health for all.