The issue of health data governance gathers little attention and evokes little emotion among the public or politicians, most of whom see it as a byproduct of health checkups or medical examinations. However, the way health data is collected, managed and used, by whom and for what purposes, should concern us all. Health data lies at the heart of who we are as individuals, as groups, and as a species, more so in a digital age where large parts of our identities are stored and reflected in disparate and composite data sets, including highly personal and private information about our health, well-being, lifestyle and identity. Despite the risks of misuse, as well as the potential benefits of widespread, ethical and effective data sharing, health data remains a poorly regulated area.
Transform Health has been calling for a global framework that governs the use of health data for the past two years. We are taking this issue to the public through the launch of our first mobilisation campaign – My Data, Our Health. The campaign aims to build public and political understanding of the issue, encourage reflection on how much control and access we have over our personal health data, and to press for the development of a global health data governance framework that regulates the collection, storage, management, sharing and disposal of health data. These standards needs to be underpinned by equity and human rights, captured in the Health Data Governance Principles, which have been endorsed by over 140 organisations and governments. Governments can support a set of common standards by backing calls for a resolution on the development of a global framework at the upcoming World Health Assembly and High Level Meeting on Universal Health Coverage (UHC). Governments should ensure any resolution on the development of such a framework include a transparent and inclusive process that meaningfully engages civil society organisations.
In the week leading up to International Data Privacy Day (28 January 2023), Transform Health and 28 partners from East and West Africa launched the My Data Our Health campaign through a series of activities and public announcements. To enable partners to share and adapt key messages of the campaign to suit local contexts and priorities, Transform Health shared the Communications & Engagement Toolkit that allowed partners to share, edit and create their own messages from the campaign in both English and French.
Organisations circulated information on the campaign through their networks, ensuring a broad reach across both West and East Africa regions. The Tanzanian Network of Women Living with HIV and AIDS, for example, circulated details of the campaign to its network of 200 CSOs, while EANNASO sent out information on the campaign through the newsletter, to its 5000 CSO members spread across seven countries: Kenya, Uganda, Tanzania (including Zanzibar), Rwanda, Burundi, Ethiopia, and South Sudan.
In Uganda Engendering Gender Uganda’s social media campaign achieved a cumulative reach of over two million people. “I am proud to say that we achieved our goal and more. Our campaign reached thousands of individuals and sparked a much-needed conversation about the importance of being informed and vigilant about our health data. We received a positive response from many people who were grateful for the information and resources we provided,” said Salome Atim, Executive Director of Engendering Gender Uganda.
The response to the launch of the campaign demonstrates the depth of feeling and the appetite from people to engage on this issue: ”Accessing my health data still remains a challenge in my country Tanzania which has no centralised e-platform to store all my health data. This creates a barrier for me owing to the fact that I cannot access all my health data from one health facility. This is why I joined Transform Health – to advocate for the My Data, Our Health Campaign, for a stronger regulatory framework based on common standards in Tanzania,” said Petrider Paul, Executive Director of Imara Leadership Initiative.
Participating organisations have been mobilising their supporters to take part in the #Where’sMyData? campaign action, inviting people to visit their health centres and ask for their health data. Some of their experiences, captured in this short video, provide a vivid sense of the range of experiences people had in trying to access their health data. So far over 200 people have registered to take part in the Where’s My Data? campaign action.
On 7th March, Transform Health held a high-level event at the Africa Health Agenda International Conference (AHAIC) to address the critical need for a common set of global standards on health data governance. The session highlighted the lived experiences of youth, women and other marginalised communities and invited panellists to reflect on actions governments could take to secure greater ownership and privacy over personal health data, and enable its safe sharing for public benefit purposes.
Transform Health launched two #MyDataOurHealth augmented reality (AR) filters for Instagram and TikTok at the event. These filters are enabling social media users to spread word about this issue in a fun and interactive way on Instagram and TikTok.
You can find the filters on our Instagram and TikTok ‘Effects’ page by looking up our handle @trans4m_health. This short guide has instructions on how to download, use and share the filter. Help us promote the issue of health data governance by using it on your platforms!
Health data governance is everyone’s business. It contains the most intimate details of our lives. It cannot be left to technical experts to determine how our health data should be collected, managed, used, stored and disposed of. We all have an interest in shaping a global regulatory framework to ensure it is protecting us as individuals and serving the common good, nationally and globally.