The health care sector generates an estimated 30% of all data. The increasing adoption of the internet of things and wearable devices is accelerating the speed and volume of health data being generated and collected on individuals everyday. The advent of AI and soon the introduction of quantum computers into the mainstream will further accelerate this trend. Though much of this data is used for research, to develop new drugs and health care products, and for health planning, a lot of it is also used for commercial purposes.
Unregulated, this data has the potential to be used in ways that would not be in the public interest, to exacerbate existing social exclusions and marginalisation, to discriminate against people with certain conditions or lock them out of access to health insurance. It can be used to regulate behaviour and control people in ways we may not be fully aware of or are unable to currently imagine. However when used effectively , ethically and in the public interest, health data can significantly improve a people’s health. It allows health planners, researchers and innovators to respond more effectively to a population’s health, both within and across borders. At the individual level it allows health staff to track patients more accurately over time, provides more accurate diagnosis and can help create more personalised treatments. It also allows patients to take more control over their health and well being.
To guard against potential negative outcomes and uphold people’s rights, we need stronger health data governance, particularly more effective laws and regulation and enforcement mechanisms. Legislation and regulation are important ways society codifies its norms and values and provides rules and guardrail for those operating in the country. We are currently confronted by the enormous potential of digital technology, but also enormous risks, if our personal health data is misused or falls into the wrong hands. This situation demands a public discussion and public debate to advocate for the passage of strong legislation and regulation to ensure we build trust in the systems that will be collecting, managing and using our health data for now, and in the future.
Advocating for a Strong, Rights-based Laws to Govern Health Data
Transform Health has been calling on governments and the World Health Organisation to develop a global framework on health data governance to establish a global standard around core areas that should be addressed in national legislation, while ensuring a degree of coherence and compatibility in the governance of health data within and across borders. Such a framework would provide a blueprint and resource that governments can use to strengthen their own national legislation and regulation. This framework should be agreed through the World Health Assembly, which convenes all Ministries of Health every year to define global health priorities and the focus of the World Health Organisation.
Transform Health and its partners have developed a set of Health Data Governance Principles, as well as a Model Law on Health Data Governance, which could help inform such a global framework. These Principles have been endorsed by 170+ organisations including a number of governments, and provide an ethical and human rights grounding for the governance of health data.
The model law on health data governance – developed following a process of consultation with nearly 1000 stakeholders from across the globe, including through more than 20 national, regional and youth consultations, expert interviews, and a widely disseminated survey to gather feedback on the draft – provides legislative considerations and guidance to support governments wanting to strengthen their own national legislation and regulation, and the foundation for a global framework.
A Campaign to Catalyse Change
Recognising the urgent need for action, Transform Health and its partners launched the ‘MyDataOurHealth’ campaign in January 2023. The campaign seeks to raise public and political awareness around the importance of robust health data governance.
The campaign was co-created with youth organisations and local partners and aims to build support for a global framework on health data governance, underpinned by the Health Data Governance Principles, to be endorsed by all governments at the World Health Assembly. So far 200 civil society organisations have taken part in the campaign and more than 2000 people engaged in campaign activities, met their MPs and went to request their health data at their local health facility. Ninety seven MPs have taken part in the campaign and agreed to take the issue forward in their respective legislatures.
Turning Awareness into Action
As part of the My Data Our Health campaign, Transform Health developed the ‘Where’sMyData?’ campaign action, where we invited individuals to go online or to their health centre and request access to their electronic health records. The campaign action aims to give a snapshot of how much control we have over our health data. We asked participants to share their experiences through an anonymised survey. The responses we received so far have been both illuminating and concerning, highlighting widespread challenges in accessing personal health information.
The data gathered through this campaign is added to an interactive visualisation dashboard, which transforms individual experiences into anonymous data that shows us the bigger picture in relation to challenges people face when attempting to access and control their own health data. The insights have revealed patterns that might otherwise remain hidden and ignored. For example only 50% of people who responded to the survey were able to access their personal health data.
Join the Movement for Better Health Data Governance
If you are concerned over how your data is being collected and used and if you want to join the campaign for better health data governance, join us and take action:
- Take part in the Where’MyData? action and fill in the questionnaire. By participating in the ‘Where’sMyData?’ action you can find out how much control you have over your health data and help elevate the issue and influence decision makers by showing them how health data is being handled across the country. Please also let others know about your experience through social media. For example, record a short video clip about your experience and post it online (in this video you will see examples of others who have shared their experiences).
- Become a Where’sMyData? Champion! Recruit 10 friends or family members to go out and take the action and fill in the online questionnaire. You might want to then share your experiences as a group, record this on your phone and upload a video on social media. The more we talk about this the more attention it will raise!
- Amplify the MyDataOurHealth campaign and your participation in the Where’sMyData action on social media by using this social media toolkit.
- Reach out to your elected representative (please use and adapt this letter) and ask them to call on the Minister of Health to prioritise action on health data governance, including strengthening national legislation and supporting the development of a global framework on health data governance through the World Health Assembly in May. You may want to contact other organisations and parliamentarians and ask them to also sign the letter and then send it to the Minister of Health, and to the media. Please also promote it on social media.