Transform Health is in New York this week for the 79th UN General Assembly (UNGA79). We are taking part in a number of exciting events during the week, including facilitating discussions and speaking on the need for more robust health data; more and better digital health investment; and the role of different stakeholders in supporting the enabling environment for the digital health transformation. Underpinning all of this, we will be advocating for equity, inclusion and rights-based approaches to be prioritised. These are key action areas to ensure we are harnessing digital health transformation to accelerate progress towards UHC goals.

With the United Nations Summit of the Future taking place during UNGA79 (on 22-23 September), where the Global Digital Compact is expected to be endorsed by governments, this represents a critical moment to galvanise action and consensus on these agendas (read Transform Health’s recommendations on the latest revision of the Compact). This entails identifying next steps and opportunities to ensure the Compact is implemented, including through sector-specific processes and upcoming global and regional gatherings, such as the AU Summit and the World Health Assembly.

Transform health is co-hosting the following events during UNGA

21 SEPTEMBER

The World Health Organization, Governments of Estonia and Ireland, the International Telecommunication Union, the Global Disability Innovation Hub, and Transform Health will co-host a Multi-stakeholder dialogue during the Summit of the Future Action Day, A Digital Future for All on Investing in Digital Public Infrastructure for Equitable Future Health Systems, with Assistive Technology as a Use Case. The session will discuss challenges with financing, governance and architecture to ensure digital health transformation is accessible to all, featuring a use case on improving access to assistive technology for 2.5 billion people in need globally. Speakers will include the Ministry of Foreign Affairs, Estonia, Permanent Mission of Ireland to the United Nations, National Health Authority India, Ministry of Health Brazil, Office of the National Coordinator for Health IT of the United States, WHO, ITU, UNICEF, Transform Health and Digital Square at PATH.

Learn more about the event.

24 SEPTEMBER

Transform Health, the World Health Organization, the Health Data Collaborative, OECD, PATH, PMNCH, and Young Experts Tech for Health (YET4H) will co-host a side event on Strengthening Health Data Governance in the Digital Age: Leadership, Collaboration, Action, as part of the Science Summit for the UN Sustainable Development Goals (SSUNGA79). During this event, we will hear personal and community perspectives on what health data governance means to them and their expectations of governments and other actors in this regard. This will be followed by a government and leadership panel exploring national experiences, leadership and needed action. The session aims to build political support to strengthen health data governance, including through consensus and commitments around a global (and regional) health data governance framework and stronger national legislation. This will help take forward commitments in the Global Digital Compact and recommendations in the recently released report of the High-level Advisory Body on Artificial Intelligence.

Register here to join in-person or virtually.

We will also be speaking at the following event

25 SEPTEMBER

“The Policy and Regulatory Environment to Enable One Health” panel at the Science Summit 

Our Executive Director will be part of the One Health Panel of the Science Summit for the UN Sustainable Development Goals (SSUNGA79), which focuses on the One Health approach, emphasising the interdependence of environmental, animal, and human health. Transform Health will speak during the session on “The Policy and Regulatory Environment to Enable One Health”. Learn more here.

Transform Health’s Recommendations on the Global Digital Compact

Preparations for the Summit of the Future are in full swing, with the gathering set to take place in New York on 22-23 September, during this year’s UN General Assembly. Among the key outcome documents of the Summit will be a Global Digital Compact, which will outline principles, objectives, commitments and actions for our digital future.

Digitalisation and the use of digital tools have become an integral part of our daily lives. Health systems and health service delivery are no exception. If managed equitably, inclusively and sustainably, the digital evolution presents an opportunity to scale up access to primary health care services, strengthen resilient health systems, improve health equity, and move us quicker towards our goal of achieving Universal Health Coverage (UHC) by 2030, as set out in the Sustainable Development Goals.

Recommendations on the latest revision of the Global Digital Compact

Transform Health has participated in various public consultations over the last year to feed into the Global Digital Compact. This includes last week’s stakeholder session on the third revision, which is currently under silent procedure with governments.

We commend the progress made on the Compact and welcome the focus on data governance, developing data policy frameworks, building digital competencies for public officials and meaningful engagement of stakeholders. However, we believe that the Compact should go further, with stronger commitments and actions that will pave the way to deliver on the ambitious goal it sets out to achieve. For this to happen, we make a number of recommendations to strengthen the Compact.

The goal of the Compact sets out a number of important aspirations for the digital future, including ensuring it is inclusive, open, sustainable, fair, safe and secure. We acknowledge the recent inclusion of “fair” in the goal statement, however, we believe this should go further by setting the ambition of an ‘equitable’ digital future for all. Moreover, whilst we commend the inclusion of stakeholder participation, we recommend an objective to “put people and communities at the centre of the digital transformation” –  ensuring diverse communities are empowered to meaningfully engage in the design, implementation, governance and accountability of the digital transformation and relevant policies and processes.

Closing all digital divides (Objective 1). While we note the recent inclusion of a health-specific commitment to map and connect all hospitals to the internet, this does not go far enough to reach those without access to health services and with the most gain from digitally-enabled care. There should be a commitment to connect all health facilities to the internet, including community health centres. Going beyond tertiary care is crucial given the importance of primary health care in reaching rural, remote and “hard-to-reach” areas, and ensuring no one is left behind. We also welcome the inclusion of a commitment around the development of digital competencies of public officials, however, we believe that health workers are an important category that should be mentioned in this regard.

Fostering an inclusive, open, safe and secure digital space (Objective 3). We welcome the commitment to ensure that the development and implementation of national legislation is compliant with obligations under international law. However, this should be stronger, with a clear commitment to strengthen national legislative and regulatory frameworks, to guide the digital transformation, ensuring that it is inclusive, equitable and sustainable and protects and upholds people’s rights.

Advancing data governance approaches (Objective 4). As part of efforts to strengthen data governance, we recommend specific commitments to strengthen the legislative and regulatory environment, including reference to the governance of health data – and that this should be underpinned by equity and rights-based principles. Health data is a unique category of data because it contains people’s most personal and sensitive information. It also holds a dual function of being a vital asset both for the health and well-being of individuals and of the wider population. Health data therefore demands special attention and governance considerations. Moreover, reference to cross-border data flows, should not be just about benefits for the digital economy, but also health benefits, including disease surveillance.

We recommend a commitment on the development, and government endorsement, of a global data governance legislative and regulatory framework – including sector specific frameworks, such as for the collection and use of health data – as well as to strengthen national legislation and regulation. A global framework would help establish consensus and alignment across countries around a global standard, which would also serve as an important resource and blueprint for countries to strengthen national approaches. The recently developed draft model law on health data governance – developed through consultations with more than 1000 stakeholders from over 65 countries – could help inform a global framework.

Transform Health and partners call on all governments and organisations to ensure the digital transformation – including that of health systems – is inclusive, equitable and represents the needs of marginalised and vulnerable communities. We call for these recommendations to be considered as part of the Global Digital Compact and we look forward to supporting next steps and implementation.

Accurate health data is an asset that has enormous personal and societal value. It contains intimate information about each one of us, that could allow us to make more informed decisions about our own health. When used for public good purposes it can allow health planners, researchers and innovators to respond more effectively to a population’s health, both within and across borders. However, many people are not aware of their rights¹ and many still consider their own data to be a by-product of the visit to the health centre². Many health workers are not aware of the rights of patients and their responsibilities in relation to health data³, and continue to treat it as a bureaucratic necessity, part of the increasing automation of the workplace. The lack of clarity over the rules and regulations that govern health data compound this situation.    

Transform Health conducted a survey to assess people’s attitudes, perceptions and understandings of health data and how it is governed. Over 2000 people responded, revealing low levels of public awareness and understanding.

Most people were more concerned about how much control they have over their data and how safe it is, rather than where it is stored.

Figure 1. What aspects of health data matter most in East Africa

The My Data Our Health campaign

In January 2023, Transform Health and its partners launched the My Data Our Health campaign across seven countries in East and West Africa (Benin, Côte d’Ivoire, Ghana, Kenya, Senegal, Tanzania and Uganda) to raise public and political awareness and galvanise action on health data and on the need for more effective legislation and regulation. The campaign was co-created with youth organisations and other partners and aims to build support for the development and endorsement of a global framework on health data governance (underpinned by the Health Data Governance Principles) by all countries at the World Health Assembly. 

In April 2023, Transform Health commissioned research to get a deeper understanding of public and political perceptions and understanding of health data governance across six countries in East and West Africa (Kenya, Tanzania Uganda, Benin, Cote d’Ivoire and Senegal). This revealed that the public conversation was limited to discussions around where the data should be physically kept and where servers should be located, with little attention paid to the issue of health data governance⁴. The mainstream media was not covering the issue, nor was it the subject of any attention from civil society and community groups⁵. 

Laws and regulations codify public values and concerns. If the public are not demanding political action on a given issue, politicians are less likely to dedicate legislative time to it. At the time of research there were no specific laws or regulations on health data across any of the six countries assessed (Kenya, Tanzania, Uganda, Bening, Cote d’Ivoire and Senegal)⁶. General laws on data privacy and security existed and there was a plethora of regulations, strategies, policies and guidance on different aspects of health data, creating potential for regulatory fragmentation.

Twenty eight partners from seven countries across East and West Africa⁷ organised a series of activities aimed at raising public and political awareness on the issue, from community engagement to high level meetings with politicians. 

We developed the Where’s My Data? campaign action as a way of making the issue relevant to people’s personal experience. This simple action invites people to go to their health provider and request their electronic health data and then to share their experience. The campaign was well received by participants:

To date, over 500 people have taken part, with 51.9% of the 512 participants denied their health information. Some were told it was lost, or destroyed, some were given the wrong records, some were told they were not allowed to access it,and some were charged to do so. Of those who did receive it, 28% were given it only after follow up.

Campaign Successes

In fifteen months the campaign succeeded in propelling the issue up the public and political agenda. 200 civil society organisations took part in the campaign and quickly recognised the importance of this issue:

Over 2000 people engaged in campaign activities, met their MPs and went to request their health data at their local health facility.

Partners engaged 97 MPs who showed great interest in the issue, and agreed to take the issue forward in their respective legislatures. 

The campaign was covered 45 times in the media, including on national television, national radio and in newspapers⁸. In East Africa alone over 6.7 million people were reached by the campaign.  

Conclusion

The digital transformation of health systems to accelerate universal health coverage and guarantee people’s right to health is premised on the collection, management, use, storage, and disposal of accurate and complete personal health data. To achieve this, clear rules and regulations based on common standards to enable the exchange of data within and across borders for common good purposes, while guaranteeing personal privacy and security, are needed. People also need more personal control over their health data. 

Transform Health is calling on governments to publicly support the development of a set of minimum core compnents for the governance of health data, set out in a global framework, for endorsement through a World Health Assembly resolution. 

Health data governance is an issue people care deeply about once they become aware of its importance and significance to themselves and to the health and wellbeing of the population. The MyDataOur health campaign will continue to build this personal and political awareness and press governments to take action on this critical issue. Find out how you can get involved here!

^{1 _{Transform Health conducted a survey of over 2000 people in which 88% of respondents were unaware whether their health data was protected by law}}

^{2 _{This point also came through in a  number of interviews conducted by Transform Health}}

^{3 _{The MyDataOur Health campaign invited people to contact their health centre and request their health data. Most participants reported that they did not receive their health data, the main reason cited was staff unsure about the request, or just refused to provide the data}}

^{4 _{Health data governance is understood as the laws and regulations that establish the rights, responsibilities, duties and obligations of those collecting, storing, using and disposing of data, national authorities, and data subjects}}

^{5 _{For more information see the results of the Benchmark report on East Africa and on West Africa}} 

^{6 _{For more information see the results of the Benchmark report on East Africa and on West Africa}} 

^{7 _{Kenya, Tanzania, Uganda, Bening, Côte d’Ivoire, Senegal and Ghana}}

^{8 _{Samples of the media coverage: TBC Television News; TBC FM; Citizen; The Daily Nation; East African; Daily Monitor; The New Vision (on patient access to data; The New Vision on MPs concerns over the handling of personal health data; UBCTV; Radio 1 FM Uganda; The Monitor; KFM radio, the country’s most popular station; New Vision; Agence Ivoiriene de Press; Gwediawayem FM; Radio Communautaire Guédiawaye FM; Radio Oxyjeune; Le Potentiel; News Sosedo; 5/7 Matin}} 

In pursuit of the digital transformation of health systems to advance universal health coverage (UHC) goals, the role of parliamentarians and parliamentary bodies is essential.  National parliaments and parliamentarians play a crucial function in: establishing and enforcing the legislative frameworks to guide the digital transformation; raising awareness about health issues among their peers and with the broader public; ensuring key issues are prioritised by the government, responding to and serving the needs of the population; and holding the government accountable for implementing health policies and commitments, ensuring that promises made translate into action. Transform Health recognises the importance of working with parliamentarians to foster an enabling environment to achieve health for all in the digital age. 

Transform Health’s partnership with the UNITE Parliamentarians Network for Global Health

Transform Health has been collaborating with the UNITE Parliamentarians Network for Global Health since 2021, with a joint ambition to leverage the pivotal role of parliamentarians to advance Universal Health Coverage in the digital age. Bringing together UNITE’s work with parliamentarians worldwide to enhance political commitment for improved global health systems, and Transform Health as a global coalition of more than 200 partners advocating for the equitable and sustainable digital transformation of health systems to achieve UHC by 2030, this collaboration exemplifies the power of partnership to deliver greater impact. 

In late 2023, Transform Health and UNITE published a joint policy brief highlighting the role of parliamentarians in supporting the digital health transformation and outlining key recommendations of how they can take this forward through tangible actions. We will soon launch a joint parliamentary toolkit that includes a range of resources (policy brief, factsheets, parliamentary questions, advocacy letter) to support parliamentarians with these efforts. Through the toolkit, we aim to help equip parliamentarians with tools and resources to drive forward the digital health agenda in support of UHC. 

Working with regional partners to engage Regional Legislative Bodies in East and West Africa

Our parliamentary engagement work extends to regional legislative bodies. In collaboration with (and led by) the Pan African Health Informatics Association (HELINA), we have engaged the East African Legislative Assembly (EALA), together with the East African Community (EAC) Secretariat, to organise a Consultative Forum on Health Data Governance, which aimed to sensitise regional stakeholders on the importance of developing an East African Community (EAC) Health Data Governance Framework and similar initiatives, to build a unified regional stance on health data governance in line with Africa CDC’s digital transformation strategy and its flagship Initiative on Health Data Governance. The meeting saw strategic dialogues on integrating the Health Data Governance principles into national regulations and a commitment to develop an EAC Regional Data Governance Framework in 2024.

In collaboration with (and led by) ENDA Santé, we have also engaged the Economic Community of West African States (ECOWAS) Parliamentarians, including through a Regional Consultation with parliamentarians and other stakeholders, which culminated in the signing of a Declaration of Commitment on the digitization of health systems and the governance of health data. This represents an important commitment from ECOWAS parliamentarians to take advocacy to the highest level, as well as expressing their leadership on healthcare issues in the region.

These strategic collaborations  are pivotal in building a cohesive regional response to health challenges and show the critical role of regional legislative bodies in advancing digital health and health data governance across Africa.

Engaging parliamentarians through the My Data Our Health Campaign 

The #MyDataOurHealth campaign – a grassroots movement for better health data governance – was launched by Transform Health in 2023 with the aim of building public and political understanding of the issue and pressing for the development of a global health data governance framework. We are engaging community-based organisations (CBOs) and parliamentarians in this campaign. Hon. Neema Lugangira, Member of Parliament of Tanzania, has been a strong champion of health data governance and a strategic partner of the campaign. 

Parliamentary engagement – a continued priority for Transform Health

The engagement of parliamentarians in Transform Health’s work is not just strategic; it is essential. By fostering collaborative relationships with these key stakeholders, we are better positioned to advocate for and support the enabling environment to achieve health for all in the digital age. Our work with partners such as UNITE, HELINA and ENDA Santé, and through campaigns like #MyDataOurHealth, exemplifies the power of collective action in driving change. We remain committed to collaborating with parliamentarians, legislative bodies, and our partners to support the equitable, inclusive and sustainable digital health transformation towards a healthier, more equitable future for all.

As we approach the 77th World Health Assembly (#WHA77) – taking place from 27th May to 1st June – Transform Health and our 150+ partners are calling on WHO Member States to take decisive action towards:

1. Stronger health data governance through the development and endorsement of a global framework
2. Increased and better-coordinated digital health investment through improved prioritisation, tracking and reporting

Ask 1: Support the development and endorsement of a global health data governance framework

The digitalisation of health systems globally has led to a significant increase in the production, usage, and storage of health data. To fully leverage the potential of health data for public benefit and improved health outcomes, while also managing risks and protecting individual rights, it’s essential to strengthen health data governance through more effective legislation and regulation. While some countries and regions are already taking steps in this direction, collaboration among countries and stakeholders can help build on these experiences and establish consensus and harmonisation around common standards, to help strengthen national frameworks. This can be facilitated through the development and government endorsement of a global health data governance framework. Towards this end, Transform Health and partners (including HELINA, AeHIN, RECAINCA, OECD and as part of the Africa CDC Flagship Initiative on Health Data Governance) are supporting the development of a Model Law on Health Data Governance, which could form the basis of a global framework.

There is already growing political momentum for a global health data governance framework. At last year’s World Health Assembly, several governments co-hosted and participated in a side-event with us on the need for action on this issue. Additionally, several governments  have written to WHO on the issue and have endorsed the Health Data Governance Principles, which underpin the model law.

Government leadership on this agenda is now critical. We urge Member States to demonstrate support during #WHA77 by:

• Co-hosting and speaking at the World Health Assembly side event on health data governance on the 28th of May, at 18:30-20:00 in Geneva.
• Prioritising health data governance and expressing support for the development and endorsement of a global health data governance framework that sets out a Model Health Data Governance Law – during official proceedings (individually and as part of regional groups).
• Endorsing the equity-and-rights-based health data governance principles, which can lay the foundation for a global framework.

Ask 2: Support improved prioritisation, tracking and reporting of digital health investment

In 2022, Transform Health published a conceptual framework to guide digital health investment, recognising its critical role in accelerating progress towards Universal Health Coverage. The report highlighted key challenges to digital health transformation, including insufficient domestic and external funding, coupled with a lack of information about levels of funding and resource needs. The lack of information poses a barrier to mobilising resources; to more effective donor coordination; to better alignment with country priorities and needs; and to ensuring funding prioritises the right areas to ensure an equitable, inclusive and sustainable digital health transformation.

During WHA77, Transform Health and our partners urge Member States to support improved prioritisation, tracking and reporting of digital health investment including:

• Prioritising digital health investment as part of national plans and strategies to strengthen health systems and deliver UHC.
• Improving the classification and tracking of digital health investment as part of existing mechanisms and UHC reporting, including through a co-designed digital health investment taxonomy and other tools .

Transform Health at #WHA77

SIDE EVENT

At the side-lines of WHA, Transform Health and partners will bring together country leadership and experts to build political will and consensus around what is needed to strengthen health data governance, including the role of a model law. The session is co-hosted by the Ministries of Health of Cameroon, Dominican Republic, Indonesia and Sri Lanka, together with Transform Health, Africa CDC, OECD, WHO, the Health Data Collaborative, Fondation Botnar, Asia eHealth Information Network (AeHIN), the Pan African Health Informatics Association (HELINA) and RECAINSA. The event will take place on the 28th of May at 18:30-20:00 at the InterContinental Hotel. If  you will be in Geneva, visit the event page to learn more and to register your interest to attend in person. Alternatively, register here to watch the event online.

WORKSHOPS AND OTHER EVENTS

Transform Health, PATH, Health.Enabled and Young Experts: Tech for Health is also organising a co-creation workshop (invite only) to consult stakeholders on a digital health investment checklist and investment taxonomy, to gather feedback and build consensus on its content and use to strengthen equitable and sustainable investment and harness the potential of digital transformation of health to achieve UHC. The event will take place on the 30th of May at 10.30am – 12.00pm at Campus Biotech. 

Transform Health, Speak Up Africa, White Ribbon Alliance and Young Experts: Tech for Health will present a gender and digital health policy brief and facilitate a discussion around key issues, opportunities and priorities to build consensus, forge a joint vision, and strengthen collaboration around digital health as a catalyst to advance gender equity and accelerate progress towards UHC. This workshop will take place on the 30th of May at 8.30 – 10.00am at Campus Biotech.

Transform Health will also contribute to the Global Initiative on Digital Health’s (GIDH) convening of the Multi-stakeholder Dialogue on National Digital Health Transformation session, during the World Summit on the Information Society (WSIS)+20 Forum High-Level Event, speaking on the topics of digital health investment and health data governance. 

• GIDH RSVP Survey – see here
• WSIS+20 Registration and Accreditation – see here (required to access the building)
• WSIS+20 Registration and Accreditation Procedures – see here

Public consultation on a draft model law (7-30th April)

To fully harness the potential of health data for public benefit and improved health outcomes, while also managing risks, protecting individual rights, and ensuring people’s data is protected from misuse, it is important for governments to strengthen the governance of health data through more robust and equitable legislation and regulation. A model law on health data governance can support this by building consensus around what is needed.

A PUBLIC CONSULTATION ON A DRAFT MODEL LAW ON HEALTH DATA GOVERNANCE (7-30 APRIL 2024)

On the 7th of April, World Health Day, Transform Health and partners are launching a period of public consultation on a draft model law on health data governance, which contains core elements, guidance and reference legal text to support more effective and equitable health data governance. The model law aims to build consensus across countries and stakeholders around essential areas that should be addressed through national legislation, while also helping to establish a level of harmonisation in national approaches to foster greater legal coherence across jurisdictions. This, we believe, would strengthen trust and collaboration across countries and facilitate cross-border data sharing, with the needed protections in place. Importantly, the model law serves as a resource for governments by offering guidance and sample text to support them to integrate the principles and standards into their existing national legislation and frameworks, or develop new laws where and if needed.

The public consultation period will run from the 7th until the 30th of April. Through this process we aim to gather stakeholder and expert feedback to strengthen and validate the draft, while building consensus, alignment and broad support around the core elements of the model law. The consultation page contains the model law and survey to provide feedback, in five languages (English, French, Spanish, Portuguese, Arabic). You can also find more information about the model law and the consultation period, resources to support governments and partners wishing to convene consultations and a social media toolkit. 

WHY IS A MODEL LAW NEEDED AND HOW CAN IT MOVE US TOWARDS MORE EFFECTIVE AND EQUITABLE HEALTH DATA GOVERNANCE?

While several countries and regions are taking steps to strengthen their health data governance legislation and regulation, approaches vary and there is no overarching consensus around core areas that should be addressed through national legislation and regulations for the effective and equitable governance of health data.

We believe that there is value in countries and other stakeholders coming together to learn from different approaches and experiences, identify good practices, understand where there are gaps, and build a level of consensus and alignment around what is needed. This would be strengthened by governments taking the model law through the process to endorse a World Health Assembly resolution, and subsequently through national implementation. 

HOW HAS THE MODEL LAW BEEN DEVELOPED?

Transform Health and partners have been supporting the development of the draft model law on health data governance. The drafting has been led by a team of legal experts, with guidance from an expert advisory group and feedback from the Africa CDC Flagship Initiative on Health Data Governance working group and the governance circles of Transform Health, a coalition of more than 150 organisations. The draft has been informed by equity and rights-based principles, among other national, regional and international instruments, commitments and best practice; inputs from multi-stakeholder regional consultations convened by the Asia eHealth Information Network (AeHIN), the Pan African Health Informatics Association (HELINA) and RECAINSA, which consulted nearly 500 stakeholders from across 65 countries to learn from experiences and gather insights and perspectives; and national legislative and regulatory landscape reviews of more than 30 countries. 

During the public consultation period (7-30 April), we will gather feedback to further strengthen the draft. This will include a widely disseminated public survey; a community forum on the 29th of April that is open to all stakeholders to learn about the Model Law and provide feedback (Register here); national and regional consultations; stakeholder-specific consultations and outreach with youth and parliamentarians; and interviews with national, regional and global experts.

The process of developing the model law has been designed to be inclusive and collaborative, to bring in a diversity of perspectives and expertise to inform its development and to ensure its legitimacy and ownership. 

WHAT’S NEXT

Following the consultation period, the draft model law will be updated to reflect the feedback received. It will be presented at a World Health Assembly (#WHA77) side event, ‘Stronger Health Data Governance through Country Leadership and Consensus’, taking place on the 28th of May 2024 in Geneva. The event will bring together experts in this field, together with country leadership, to build the consensus needed to drive this agenda forward.

Government leadership on this agenda is critical. The model law provides a starting point for governments to discuss, negotiate and build consensus around what is needed to strengthen health data governance. We encourage governments to take the model law forward, through  Member State consultations, towards its eventual endorsement through a World Health Assembly resolution and regional processes. As we look towards the 77th World Health Assembly in May 2024, we encourage governments to take action to move this process forward.

The model law on health data governance is an important step and opportunity to move us towards more effective and equitable Health Data Governance, laying the foundation for improved public trust in health data systems! 

If you have any questions or would like to get involved, email us at info@transformhealthcoalition.org.

Digital transformation of health is an important accelerator of progress towards Universal Health Coverage (UHC) and improved health equity. It also offers an important entry point to address gender inequalities in health access and outcomes and improve women’s and girls’ health and wellbeing. However, this requires an intentional focus to prioritise gender within plans, strategies and financing for the digital transformation of health systems.

Transform Health is a coalition of more than 150 organisations committed to harnessing the potential of digital tools and data to achieve UHC by 2030. With our focus on the individuals and communities who are most affected by the lack of access to affordable and high-quality healthcare, particularly young people, women and marginalised communities, we have been identifying priority areas for action around gender and digital health, with the aim of working with partners across the health, digital health and gender landscape to drive action.  

Our early research has revealed that women and girls face particular challenges in accessing digital solutions and benefiting from the digital transformation of health to improve their health and well-being. As part of this work, we conducted a survey to gather the inputs of communities, organisations, health workers and other experts on the key barriers, challenges and opportunities for women and girls to fully benefit from the digital transformation of health systems. These important perspectives will help inform a new policy brief that we will launch later this year. This blog highlights key issues that have emerged from the survey. 

Challenges preventing women and girls from accessing and benefiting from digital health solutions 

Many of the challenges and barriers are applicable across diverse contexts and geographies. A key access barrier is limited internet connectivity and gender-skewed smartphone ownership, particularly in low-resource settings and rural areas, which hinder the ability of women and girls to fully utilise digital health solutions, restricting their access to health information and care. Digital health solutions also often overlook the specific needs and preferences of women and girls, resulting in them inadequately addressing their specific healthcare concerns.

Cultural and social factors also play a significant role in hampering women’s access to digital health solutions. Gender norms and societal expectations often discourage women from independently engaging with digital health platforms, due to fear of social stigma or familial repercussions. Policy and governance issues also play a role. The absence of gender-sensitive legislation and policies can expose women to privacy breaches and misuse of their health data, eroding trust in digital health platforms. Without adequate safeguards and regulations, women may remain hesitant to utilise these services, further widening the gap in healthcare access and outcomes.

Opportunities to improve access to digital solutions for women and girls 

A key opportunity that can help improve access to and the use of digital solutions is increasing investment in education and awareness, through digital skills programs targeted at women and girls. Such programs can support  basic digital literacy, along with specific skills related to navigating digital health platforms. Additionally, allocating funding specifically towards research, innovation, and implementation of digital health solutions tailored to women’s unique healthcare needs and preferences  is important. 

Another area is fostering a more equitable healthcare landscape by ensuring that digital health solutions are unbiased, accessible, effective and respond to the needs of all individuals, regardless of gender. Similarly, gender considerations should be considered in the design and implementation of digital health governance systems, including the handling of health data, thus facilitating greater trust, participation and engagement in digital health platforms.

What next?

Transform Health will convene a workshop at the Geneva Digital Health Forum, around key issues, opportunities and priorities within gender and digital health, with the aim of building consensus, forging a joint vision, and strengthening collaboration around needed action. During the session we will launch a new policy brief outlining positions on the intersection of gender and digital health, while setting out key areas and opportunities where Transform Health and our partners aim to play a strategic role to drive progress in this area. 

We are committed towards advocating for equitable, sustainable and inclusive digital transformation of health systems to deliver UHC. Narrowing the digital gender divide and fostering more inclusive and equitable healthcare systems that meet the diverse needs of women and girls worldwide is a pivotal point of action in this direction.

Transform Health’s recommendations for the G20 2024

This statement is issued by Transform Health, the Partnership for Maternal, Newborn and Child Health (PMNCH), HealthAI – The Global Agency for Responsible AI in Health, RECAINSA, AeHIN, FIND and PATH.

Transform Health and partners (a coalition of 150+ organisations) welcome the Brazilian presidency of the G20 Health Working Group’s focus on Building Resilient Health Systems worldwide and working collectively to make progress in achieving universal health coverage (UHC). Digital technologies in health and the digitisation of healthcare are rightly prioritised as critical opportunities to drive progress towards the achievement of UHC and to ensure quality health services to those most in need, with a focus on sustainable and equitable digital transformation.

This offers an important opportunity to build on the work and commitments of previous G20s, including last year’s launch of the Global Initiative on Digital Health (GIDH) and a commitment from Health Ministers to support its implementation. We therefore commend the Brazilian Presidency’s proposition of setting clear goals for the implementation of the GIDH and facilitating coordination with other existing frameworks.

Towards these goals, Transform Health and partners urge G20 leaders to prioritise the following action areas to ensure the equitable, inclusive and sustainable digital transformation of health systems to deliver UHC:

1. Prioritise action to strengthen health data governance, to facilitate responsible data sharing for public benefit, while safeguarding individual rights. We encourage G20 governments to support the development and endorsement (through a World Health Assembly Resolution) of a global health data governance regulatory framework that contains a draft model law and regulation, setting out core components for health data governance regulations (a regulatory playbook), as a resource and benchmark for governments to strengthen their national approaches. We further encourage governments to endorse the equity and rights-based health data governance principles which provide a foundation for stronger regulation and a global framework. Discussions through the G20, alongside the World Health Assembly, would help establish consensus, alignment and agreement across countries around what is needed, while also establishing a level of harmonisation across countries, which is important to facilitate responsible cross-border data sharing. 
2. Ensure more effective and accountable digital health investment, as part of wider health system investment to deliver UHC. This is an important catalytic investment to build stronger and more resilient health systems that leave no one behind. Funding must prioritise areas that support the equitable, inclusive, sustainable digital transformation of health systems, and it must be coordinated and aligned with national priorities. G20 governments should also prioritise action to address the lack of available, or systematically collected, information on digital health investment, which is requisite to identify and close funding gaps and for better coordination. This includes building consensus around how both domestic and donor investments in digital health transformation should be classified, for example within existing mechanisms such as National Health Accounts and the OECD-DAC donor reporting system, alongside efforts to strengthen routine and sustainable mechanisms for reporting and tracking of investments. Operationalising the GIDH serves as an important opportunity to support this.
3. Operationalise the Global Initiative on Digital Health (GIDH) to drive more coordinated and impactful digital health action. G20 governments, through catalytic investments in GIDH lighthouse countries identified in 2024, should align with country-led priorities and needs towards their digital health transformation. G20 governments should ensure that the GIDH prioritises improving the availability and transparency of digital health funding information and better tracking of investment. The meaningful engagement of civil society must also be prioritised as goals are set for the GIDH and as it is operationalised so that it responds to population needs, including vulnerable communities, women, children and adolescents.
4. Make a G20 commitment on responsible Artificial Intelligence (AI) governance for health, including to work across governments and other sectors to prioritise equity and rights-based approaches in strengthening policies and regulation for AI in health in order to cultivate trust and catalyse innovation. Prioritise the collaborative implementation of  global guidelines and principles into country-led regulatory systems and workflows, to support the responsible development, adoption and deployment of responsible AI solutions in health. Ensure responsible AI development and deployment that prioritises health equity, transparency and accountability, while addressing potential biases and ethical concerns, which is essential for building trust and ensuring positive outcome for all. We also encourage G20 governments to recognise and prioritise the need for robust data governance as the bedrock for more effective and equitable digital health and AI governance.

These action areas should be prioritised by G20 countries, both through G20 processes, as well as other important processes and meetings throughout the year, including the World Health Assembly, UN General Assembly, UN Summit of the Future, World Bank meetings, among others. These offer continued opportunities for deliberation, consultation and to take forward action. 

Transform Health and its partners stand ready to support the G20 in achieving these goals and making important progress towards delivering health for all in the digital age.

Universal health coverage (UHC) is aimed at ensuring all people have access to essential health services without financial hardship – a goal that all countries have committed to through the Sustainable Development Goals. However, progress remains slow across many countries. Digital health transformation and digital tools offer immense potential to accelerate UHC and equitably improve health outcomes. But realising this potential will require focused investment and  action.

Transform Health has long recognised the catalytic power of digital health in building stronger, more resilient health systems that can deliver health for all. Our flagship report, “The case for digital health: Accelerating progress to achieve UHC”, outlines the critical role of digital health and needed action to strengthen digitally-enabled health systems. Building on this, last year we launched a new report, “Closing the Digital Divide,” which makes the investment case and calls for increased, better coordinated and better targeted funding in the equitable digital transformation of health systems, as an integral part of overall health system financing. 

The Global Digital Health Strategy and the new Global Initiative on Digital Health (GIDH) recognise the role of digital health as “a proven accelerator to advance health outcomes and achieve UHC”, offering opportunities to align convene stakeholders towards this goal.  The World Bank’s “Digital-in-Health:Unlocking the value for everyone” report reinforces the concept of blending digital and health investments into one integrated approach. 

Digital health must be a core part of delivering UHC

We are seeing an important shift – digital can no longer be seen as an add-on, as a vertical health issue or as an issue merely for the private sector. Digital tools and the digital transformation of health systems must be embedded across health systems and central to UHC strategies. 

While the UHC Political Declaration – endorsed by Governments at the UHC High-level meeting in September 2023 – recognised the important role of digital health, it didn’t go far enough to recognise the game-changing potential of digital health transformation as a health system enabler and critical component in achieving Health for all.

We must also go further to bring the digital health and UHC communities together, which still operate far too much as separate groups of stakeholders, despite working towards similar aims. We must merge these conversations and work to deliver faster and more impactful change.

Excited optimism as we look ahead

We are optimistic as we look ahead and to the increased recognition and prioritisation of digital health transformation as a driver of UHC progress.

Transform Health is already a strong supporter and partner of UHC2030, as well as the civil society engagement mechanism (CSEM), as a driving force for UHC to be achieved by 2030. We are excited to now join the UHC2030 Task Force and look forward to supporting the work of the movement, including efforts around the role of digital health and health data governance as key catalysts towards achieving UHC goals.

We also look forward to working with partners as we take forward key priorities to harness the transformative potential of digital health, including through: 

• Increased and better targeted funding 
• Ensuring a digitally-enabled health workforce
• More robust and equitable governance of health data
• Putting communities are at the centre of digital health, and
• Closing the digital divide

Through digitalisation we can move faster towards our UHC goals. The time for action is now!