Since the virtual launch of the #MyDataOurHealth campaign on 23 January, our 28 community-based partner organisations in East and West Africa have made remarkable progress, raising awareness of the issue of health data governance among the public, the media and politicians. As a result of this engagement more people are aware of the issue and starting to value their health data, more organisations are calling for government action on this issue, there is more media coverage, and more engagements with governments across East and West Africa. This is leading to progress in getting governments to endorse the Health Data Governance Principles, and supporting a global framework on health data governance at the World Health Assembly, that can then be used as a basis for national legislation.
Partners began their outreach by engaging their own supporters and networks, raising their awareness through social media and in workshops, and inviting them to participate in the Where’sMyData? campaign action. One hundred and five people registered for the campaign Action in the first two weeks. The impact is being felt on our partners:
“The My Data Our Health campaign has brought new ideas in our community that build the confidence of Women living with HIV and adolescent girls and young women (AGYW) to demand their data. Previous no one, including myself was aware of the importance of accessing personal health data. It is raising the debate even to media personnel as they didn’t understand at first why it is important but now they can link this to health improvement in the country”, said Joan Chamungu, Executive Director, Tanzania Network of Women living with HIV and AIDS (TNW+).
‘Empowering young people and their communities to control their health data is pivotal in shaping a future where they are active in their healthcare and can access digital services and information to enable them to enjoy their rights. At the heart of the digital transformation of health is the question of data. If we, as young people, don’t even have control over our own health data, then we will play no part in this digital transformation, and many of us will be ignored and left behind when governments make their decisions around health priorities. This is why the My Data Our Health campaign is important to us,” said Edmond Magara, Head of Programs for Youth Alive! Kenya.
A short film on the experiences of those who took part in the ‘Where’s My Data?’ action and tried to find their health data was produced. This film has been used online and during different events. In addition we asked people to fill in a survey on their perceptions and understanding of health data. To date over 2000 people have done so. Results of the survey are being used as a benchmark for the campaign.
Partners have also been promoting two Instagram and TikTok filters we developed aimed at raising awareness of the issue in a fun and interactive way. So far the filters have been viewed by over 13 thousand people. We’ve developed a user guide here on how to use the filters.
EANNASO and Girls First Initiative collaborated on a Twitter Space event to consider the issue of health data governance across the East Africa region and to explore the role of civil society organisations in advocating for a global health data governance framework. These online discussions add to the broader set of conversations taking place on this issue and raises its profile.
In May our partner, VIA -ME organised a Youth-Summit to raise awareness of the issue of health data governance among youth-led organisations in the run up to the World Health Assembly. The 41 young people who attended developed a manifesto on health data governance that called on the government to take action. The event was covered on national television. At the summit 37 organisations endorse the Health Data Governance Principles. Participating organisations also promoted the event and the manifesto among their supporters and networks.
An important aspect of the campaign is to broaden understanding and support for the issue. To achieve this, partners have been reaching out to civil society organisations working on the issue of health and UHC to ensure they integrate calls for more effective health data governance into their priorities. In June our partners FENOS-CI, OSEFF and AFPROEX in Côte d’Ivoire conducted a successful civil society workshop in which the National Federation of Health Organisations endorsed the campaign. This event was also covered in the national media.
To raise public awareness our partners have been working with journalists across the two regions. Partners in Uganda and Tanzania organised workshops with journalists in April to raise their awareness of the issue and its importance. Engendering Gender Uganda has also hosted a workshop with journalists in Uganda who have begun to publish media stories; 2 stories have been published so far. In Côte d’Ivoir, FENOS-CI held a media training with journalists on the issue of health data governance that was covered on national television. Coalition partners were provided with a Communications Toolkit in English and French to encourage them to create their own content and assets. Partners in Tanzania used these assets in their press statement in celebration of World Health Day calling for a global health data governance framework. Other partners have been using these materials in their own communications products and on their own websites.
All these engagements serve to raise the profile of the issue of health data governance among the public and politicians and build political support for the campaign. The collective engagement under the banner of MyDataOurHealth also creates a sense of sale that one organisation alone would not be able to achieve, and is more likely to come to the attention of decision makers in government.
Our partners have been engaging politicians directly to raise their awareness of the issue and to get the government to endorse the Health Data Governance Principles and support calls for the creation of a global framework at the World Health Assembly.
In Benin, One World and other partners hosted the ‘Data For Health’ symposium that was attended by almost 60 participants, including representatives from the Ministry of Health, the National Statistics Office, the Ministry of Digital Technology civil society, youth representatives, among many others. The symposium aimed to generate awareness and inspire action for stronger health data governance and a global regulatory framework to achieve greater health equity. The event was covered on national television and in the newspapers. One World followed up this event with a meeting with the Director of the Department of Data Management at the Ministry of Health who expressed her support for the objectives of the campaign. Partners in Côte d’Ivoire met representatives from the Department of Digital Health and Data from the Ministry of Health to discuss issues related to the campaign. This meeting was very positive and our colleagues are now aiming to have further meetings to explore the government’s endorsement of the Health Data Government Principles and support for a global framework.
At the regional level in East Africa, Transform Health held an event on health data governance and promoted the campaign at the Africa Health Agenda International Conference (AHAIC 2023). The high-level event sought to address the critical need for a set of global standards on health data governance. The session highlighted the lived experiences of youth, women and other marginalised communities who participated in the Where’sMyData? action and invited panellists to consider actions governments need to take to address the issue of health data governance.
In the coming months partners plan to step up their engagement and convince governments in East and West Africa to take a lead in endorsing the Health Data Governance Principles and in calling for a set of common standards. Through their engagement they will be contributing to a reframing of the issue of health data and a renewed appreciation and understanding of its importance to us as individuals (it does contain our most intimate details after all!) and as societies.
Background
Transform Health is calling for a global health data governance framework, underpinned by equity and human rights based principles, to be developed and adopted by governments (guided by the coalition’s Health Data Governance Advocacy strategy). To ensure this happens, we need governments to support and adopt a World Health Assembly resolution mandating the WHO to develop a global framework. It is important that such a framework is developed through an inclusive, multistakeholder process. A global framework (endorsed by governments through the World Health Assembly) would establish an agreement between nations around a set of common regulatory standards for the governance of health data. Once adopted, we ultimately want to see a global framework adapted at regional and national levels, to guide and inform the development/strengthening of national health data governance legislation/regulation and regional frameworks.
Earlier this year, Transform Health launched the #MyDataOurHealth, 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. The campaign aims to build up public and political support for stronger health data governance and for the need for a set of global standards to inform national legislation.
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.