Recommendations from multi-stakeholder consultation on G20-proposed Global Initiative on Digital Health

Ahead of the 2nd meeting of the G20 Health Working Group, Transform Health was invited to organise a multi-stakeholder consultation on a new global initiative to accelerate the digital transformation of health systems, proposed by India’s G20 Presidency. The consultation brought together more than 80 participants to provide inputs on various aspects of the initiative.

Stakeholders welcomed the initiative and its potential to help close existing funding gaps and accelerate the equitable digital transformation of health systems, particularly in low and middle-income countries (LMICs), while also sharing recommendations to guide its development and implementation.

Digital health prioritised by Indian G20 Presidency

‘Digital health innovations and solutions to aid universal health coverage and improve healthcare service delivery’ has been identified as a priority for India’s Presidency of the G20 this year. Under this priority area, the Indian government is championing the establishment of a Global Initiative on Digital Health (GIDH). The proposed initiative seeks to harmonise the current fragmented global digital health landscape and address barriers to scaling and sustaining the digital transformation of health in all parts of the world.

Transform Health coalition partners and other stakeholders were invited to share their feedback on the GIDH during a virtual consultation on 24th March and through an online survey. Stakeholders were asked to share their feedback on six aspects of the GIDH: its scope; how it should align with other initiatives and principles; how it should be governed; the role of different stakeholders; how funding should be mobilised and distributed; and how the success of the initiative should be measured.

At the opening of the virtual consultation, Transform Health’s Executive Director Mathilde Forslund welcomed the G20’s prioritisation of digital health and the huge opportunity for this to help take forward recommendations in the coalition’s digital health investment report that was launched last year. The report looks at the challenges within the current funding landscape for digital health and lays out six key recommendations for national governments, international donors, and the private sector to increase and improve investments towards building digitally-enabled health systems that improve health outcomes for all. 

Key stakeholder recommendations from the consultation

More than 80 individuals from over 50 organisations provided feedback on the GIDH. Contributions came from across the globe and represented a diverse range of sectors, including civil society, bilateral donors, multilateral agencies, health implementing organisations, regional digital health networks, youth networks, academic institutions and technical agencies.

Stakeholders recommended that the initiative should:

  • Set a bold, global vision for the digital transformation of health, and also deliver tangible outcomes for LMICs in areas such as:
    • Increasing the capacity of governments and their partners to build stronger and more equitable digitally-enabled health systems;
    • Strengthening global governance and regulatory frameworks for digital technologies and data; and
    • Establishing sustainable investment models to support the development and implementation of digital health strategies.
  • Align with existing initiatives – notably the WHO’s digital health strategy – and help improve coordination and alignment between different initiatives and networks.
  • Be grounded in existing principles for digital development, data governance and donor alignment, as well as human rights.
  • Leverage existing organisational structures and funding instruments to reduce costs and further fragmentation of the global health architecture. An independent and inclusive governance and oversight mechanism should however be created.
  • Reflect the diverse ecosystem of global, regional and national stakeholders involved in digital health, including end users, in the initiative and its governance. 
  • Prioritise funding to support the development and implementation of national digital health strategies. Funding streams could also be made available for other organisations to deliver activities that support national digital health strategies and/or cross-border goals. 
  • Focus on LMICs who are most off-track to achieve UHC and with lowest levels of digital health maturity.

 

READ THE FULL CONSULTATION REPORT

A Call To Prioritise Digital Health – An Important Accelerator Of UHC Progress

Transform Health’s asks for the World Health Assembly, UHC High Level Meeting and G20

Digital health is already an important and growing part of most health systems. It offers a huge opportunity to accelerate progress towards achieving the Sustainable Development Goal of reaching Universal Health Coverage (UHC) by 2030. The equitable, inclusive and sustainable digital transformation of health systems can help scale up access to primary health care services, strengthen resilient health systems, close equity gaps to deliver health for all.

Despite progress, many countries are not on track to achieve their UHC targets by 2030, with the COVID-19 pandemic having thrown many countries off course. The High-Level Meeting on UHC, taking place on the 21st of September, is an important juncture to spur action towards achieving UHC goals and to hold world leaders accountable to commitments made just four years ago in the Political Declaration from the 2019 United Nations High-Level Meeting on UHC. The 76th World Health Assembly in May and this year’s G20, which has prioritised digital health, are key milestone moments to help stimulate needed commitments and action.

 
 
 
 
 
View this post on Instagram
 
 
 
 
 
 
 
 
 
 
 

A post shared by Transform Health (@trans4m_health)

Transform Health – a coalition of 100+ organisations advocating for health for all in the digital age – is calling for digital health and health data governance to be prioritised as key accelerators and components for Universal Health Coverage to be achieved by 2030. Today we have published eight key asks for this critical year of action. At the World Health Assembly in May, the High-level meeting on UHC in September, and as part of the G20, we urge governments and other stakeholders to:

  1. Prioritise digital health transformation as a cross-functional enabler and accelerator to achieving UHC by 2030, rather than a siloed vertical health issue.
  2. Champion health data governance and call for the development of a global framework to establish a set of common regulatory standards (for subsequent endorsement by governments at the World Health Assembly in May 2023), to strengthen national legislation and regulation and govern health data sharing across countries.
  3. Ensure a global health data governance framework is developed through a transparent and inclusive multistakeholder process (with the meaningful engagement of civil society) and underpinned by equity and rights-based Health Data Governance Principles. We call on governments to endorse the Principles, which provide a foundation for the development of a global framework and should inform national legislation, regulation and policies.
  4. Increase and better target funding for digital health, to support the equitable, inclusive, sustainable digital transformation of health systems, as part of wider health system investment to deliver UHC. Ensure funding is coordinated and aligned with national priorities.
  5. Develop national costed digital health strategies as an integral component of UHC and health system strengthening agendas. Strategies should be developed, implemented and monitored in an inclusive and participatory manner, with the involvement of all relevant stakeholders.
  6. Establish a strong national regulatory and policy environment to guide the digital transformation of the health system so that it is inclusive, equitable and sustainable. This is important to establish what kind of digitalised health system a country needs to achieve UHC.
  7. Strengthen mechanisms for meaningful multi-stakeholder engagement at all levels of planning, strategy, execution and monitoring to ensure the digital transformation is effective in improving health outcomes and accelerating UHC progress. This must include the meaningful engagement of civil society, youth, women and marginalised and hard-to-reach communities.
  8. Close the divide in digital access, prioritising strategic, targeted and coordinated actions to ensure this happens. This is a prerequisite for equitable access to technology-enabled health services. This means confronting coverage gaps, affordability and digital literacy.

DOWNLOAD POLICY BRIEF


We cannot miss this critical opportunity to prioritise digital health and health data governance to accelerate progress towards achieving Universal Health Coverage by 2030.

DigitALL: Promoting gender equity within digitally-enabled health systems

Transform Health’s reflections on International Women’s Day 2023

Today is International Women’s Day. Under this year’s theme, ‘DigitALL: Innovation and technology for gender equality’, we reflect on the opportunities that innovation and technology offer to improve gender equity in health access and outcomes, while also recognising current barriers and challenges, that if not properly addressed will only perpetuate disparities and widen the gender divide.

Transform Health has been advocating for the digital transformation of health as a route to strengthening primary health care and accelerating progress towards Universal Health Coverage (UHC). Digital tools can improve the accessibility, affordability and quality of health services, presenting enormous opportunities for advancing UHC and improving health equity. This includes a huge opportunity to address gender inequalities in health access and outcomes and improve women’s and girls’ health and wellbeing. However, if gender is not prioritised as part of countries’ digital health transformation, including gender transformative policies and frameworks to protect the rights and privacy of citizens, with special considerations for the needs of different population groups, including women, girls and marginalised groups, we risk exacerbating inequalities and undermining human rights. 

On International Women’s Day, we reflect on the opportunities that innovation and technology offer to improve gender equity in health access and outcomes, while also acknowledging that current barriers, if not properly addressed, will only perpetuate disparities and widen the gender divide.

Gender inequalities affect health access and outcomes, with women and girls disproportionately impacted due to biased gender norms, limited access to/control over resources, restricted decision-making power, restricted mobility and limited ability to engage with health programmes, among others. Technology innovation brings in additional barriers – including limited access to mobile phones and lower levels of digital literacy.

However, digital tools can also give women and girls more power to support their health-seeking behaviour and empower them to track their own health data. Technology and the internet can improve women’s understanding of their own health needs and issues, which are usually deprioritised. Where women’s access to health services is low, digital health can help improve access and affordability through services such as telemedicine. 

To ensure this happens, the digital gender gap and digital literacy gap must be addressed to ensure meaningful participation in today’s digital age. Across low and middle-income countries (LMICs), women are 7% less likely than men to own a mobile phone and 15% less likely to own a smartphone. A global analysis of 133 systems across industries found that 44.2% demonstrate a gender bias and the data used to develop AI algorithms and other technologies is rarely representative of all ages, genders, ethnicities and regions. Therefore, when health planners are looking to allocate resources and implement programmes to address the health needs of the population, that may be skewed by an inaccurate picture of the situation with certain groups under-represented and thereby their health needs not being addressed. This will increase the gap between those who stand to benefit from digital health technologies, and those that are excluded and left behind.

A global analysis of 133 systems across industries found that 44.2% demonstrate a gender bias and the data used to develop AI algorithms and other technologies is rarely representative of all ages, genders, ethnicities and regions. (Source)

Closing the digital gender divide requires addressing the numerous barriers and challenges that exacerbate the digital gender divide, with concerted effort from various stakeholders, including governments, the private sector, civil society and individuals. 

Transform Health calls for communities to be at the centre of digital transformation in order to achieve UHC and leave no one behind. Governments and technology developers must involve diverse communities, including women, in the planning, design, decision making, implementation and monitoring of digital health policies and programmes. Women must be given adequate opportunities and resources to shape digital health and data governance and hold those in power to account. 

In 2023, Transform Health will be ramping up our work on gender and digital health. This will include:

  • Co-creating positions to guide priority areas for action, working closely with coalition partners and wider stakeholders.
  • Launching a new survey to hear from communities, organisations, health workers and other experts their perspectives on the key barriers, challenges and opportunities for the digital transformation of health systems to help close gender gaps in health outcomes and move us closer towards UHC and Health for All in the digital age.
  • Developing our gender position as we continue to advocate for the equitable digital transformation of health systems – to achieve Universal Health Coverage for all by 2030.

Governments and technology developers must involve diverse communities, including women, in the planning, design, decision making, implementation and monitoring of digital health policies and programmes.

Transform Health is committed to doing work differently, to ensure that we operate in line with our core principles of equity, empowerment, rights, partnership and inclusion. When going against history and global systems, this takes concerted efforts. Check out our targets and how we track against them in our Equity and Inclusion Dashboard. 

If you are working on gender and digital health or have ideas on this issue and would like to collaborate, please reach out to Ndifanji Namacha.

Transform Health’s vision for a global framework to drive the equitable governance of health data

Transform Health is encouraged by the growing momentum around the need for stronger data governance, including the recently published article “Towards an international data governance framework”. While we welcome these moves, we are also keen to ensure stronger governance for health data specifically, which we feel is more than just a sub-category of data, and merits its own specific governance structures. 

Just last week, over 90 organisations signed onto a global letter  calling for health data governance to be on the agenda of the 152nd WHO Executive Board meeting in January and the 76th World Health Assembly in May and for a resolution to initiate the development of a global health data governance framework. In less than a week, the number of organisations joining this call has grown to over 120!

We are keen to ensure stronger governance for health data specifically, which we feel is more than just a sub-category of data.

 As the Health Data Collaborative (HDC) Stakeholder Representatives Group wrap up  their first face-to-face meeting since the COVID-19 pandemic, and as we look ahead to next year’s WHO Executive Board meeting and World Health Assembly, Transform Health would like to set out why we need and what we envisage by a “global health data governance framework”: 

  • First out, we believe that a global health data governance regulatory framework – endorsed by governments through a World Health Assembly resolution – would lead to a much needed set of agreed regulatory standards that countries could adopt into national legislation to ensure the equitable governance of health data.
  • Such a framework should be based on a set of norms and standards, which draw on existing duty obligations countries have made to respect, protect and uphold basic rights, as set out in different international treaties such as the ICCPR, ICESCR, CRC, CEDAW, as well as commitments made in the UDHR, the Declaration on the Future of the Internet and other ICT norms and standards.
  • While there is a need for  a broader data governance framework, the specific sensitivities around health data and its importance in maintaining the health and well being of both individuals and the wider population, justifies a health-specific data governance framework.
  • A framework should go beyond a set of technical guidelines or a global compass and instead focus on the regulatory environment to ensure political commitment and the elements necessary to enable legislatures to develop the laws and regulations needed to govern the collection, ownership and use of health data and data for health.

Advocating for stronger health data governance 

Advocating for a global health data governance framework remains a  key priority for Transform Health . We believe that such a framework would lay the foundation for improved public trust in health data systems where individuals feel protected, respected and in control of their own data while allowing institutions working to protect the health and well being of the population to access and use it for the public good. 

Transform Health partners are calling for health data governance to be on the 2023 World Health Assembly agenda

Transform Health partners are calling for: 

  • Health data governance to be on the agenda of the WHO Executive Board meeting and World Health Assembly and for a resolution to be tabled for the development of a global health data governance framework. Transform Health believes a resolution at the World Health Assembly mandating the WHO to develop a global framework on health data governance would be the most effective way of ensuring we develop a set of global standards on this critical issue. 
  • A global health data governance framework to be developed through a transparent and inclusive, multistakeholder process, including the meaningful engagement of civil society and communities. 
  • A global framework to be underpinned by equity and rights-based principles, such as the recently launched  health data governance principles  and other relevant initiatives, to ensure it prioritises the protection of people, the promotion of health values, and equity. The Principles were developed through a participatory and inclusive multistakeholder process  (including private and public sectors, academia and civil society) and have already been  endorsed by 130+ organisations . We believe they encapsulate many of the aspects envisioned for the Global Data Compact.

Transform Health is committed to help coordinate the engagement of different stakeholders in the development of a global health data governance framework and to ensure it is socialised and gains broad acceptance across different countries and regions and gets adopted and domesticated into national legislation. 

We look forward to collaborating with WHO, governments and partners to help advance this agenda – to strengthen equitable and responsible health data management to ensure it maximises public benefit within and across borders, whilst safeguarding data privacy, ownership, and rights.

Stories from the Digital Age: Young People’s Experiences with Sexual and Reproductive Health

~ Sharon Sitati

(Sharon is a writer, PR specialist, and sexual/reproductive health advocate based in Kenya with a focus on digital health. She aims to create a world of health and wellness for all)

Digital health has become an increasingly popular means for young people to access Sexual and Reproductive Health information and services. However, the experiences of young people with digital health reveal some concerns about its reliability, accessibility, privacy, and security.

Many young people express concern about misinformation on the internet, which can be particularly dangerous for those wanting to make decisions and unsure about whether what they are reading is an objective fact or just an opinion disguised as fact: “I am a Google person on a lot of stuff so I learn many great new things from different online platforms, but I do not trust most of this information 90% of the time,” says 23 year old Jane (not her real name).

Jane’s response is quite similar to that of Naomi’s, a student in one of Nairobi’s Universities in Kenya, who says that she is more concerned about misinformation on the internet. “There are a lot of apps, platforms and websites that masquerades as genuine health-informing even though they are not, but as a young naive person, I might not know.”  This is especially true for young people who may be too afraid or uncomfortable to discuss certain sensitive topics with their parents, teachers, or caregivers.

“My parents do not know that I am sexually active, and being a daughter from religious background sex before marriage is something you do not mention. I have to depend on the internet for information on the best contraception method it can suggest.” Say Sylvia, a high school student in Bungoma.

Sylvia and other young people turn to the internet to seek answers and may fall prey to inaccurate or misleading information. Sylvia’s sentiments remind me of the many times I have seen young girls with complications and reproductive health issues after using a contraception method suggested by their peers only for the body to react differently. It is crucial that young people have access to accurate, timely and reliable information about contraception, STDs, safe sex, and other issues related to Sexual and Reproductive Health.

However, even when accurate information is available, it may not be affordable for some young people to access certain services. For example, consulting a gynecologist or specialist may be costly and beyond the reach of many young people. Jane says although she might know platforms where she can talk to a specialist, affording the services like that of a gynecologist is expensive.  Additionally, young people may be uncomfortable or unwilling to share their personal information online, fearing that their privacy may be compromised. Digital health services must be affordable and prioritize data privacy and security to ensure that young people have access to reliable information without compromising their privacy.

Young people also express concern about the control and use of their data. Many are unaware of who controls their health data and how it is used. Jan says, “when I cannot access the data I fed into the forms, I do not feel like I have control over my data.” While some young people are comfortable with sharing their information online, others are more cautious and prefer to have greater control over their data. Jane says she stops or skips filing online forms immediately she starts feeling uncomfortable. She elaborates that the reason she skips or stops where she doesn’t feel comfortable answering is about the security of the information. “Being a Google person, I am aware there are data breaches and am concerned of what happens when my information leaks,” she says. The potential for data breaches or unauthorized access to personal information is also a major concern, and young people need to be informed about the security measures in place to protect their data.

Digital literacy is essential for young people to navigate the digital health landscape. Some young people may not know how to differentiate between credible and spurious sources of information or may not have the skills to access the information they need. Whereas Jane does not feel able to discern factual from non-factual information on the internet, she does not trust the information 90% of the time, for those with no digital literacy and who cannot access the internet they are missing out on important health information 100% of the time. Digital health providers must ensure that their platforms are user-friendly, accessible, and designed with the needs of young people in mind, wherever they may live.

Knowing where to get Sexual and Reproductive Health information and services online is a life saver especially for young people who are afraid to talk to their caregivers about what they are going through. Even though some say more information on sex makes them want to explore the taboos around sex and talk about it more, having such information recommended to you by an online platform can be annoying. It also acts as a constant reminder that someone knows what you have been looking up and are keeping tabs on you. Social Media monitoring and tracking will make people feel less comfortable looking up for information. Imagine searching about safe abortions only for you to keep bumping into the same even though you never wanted anybody to know?

At a time when Kenya still criminalizes same sex relationships, people from key populations may face discriminations when looking up information or accessing services that could save their lives.

Digital health has the potential to improve access to Sexual and Reproductive Health information and services for young people. However, digital health services must address concerns about reliability, affordability, privacy, and security to ensure that young people have access to accurate reliable information without compromising their privacy. Additionally, digital literacy and access to reliable sources of information must be prioritized to ensure that young people can navigate digital health services safely and confidently. Young people’s experiences and feelings about health data are shared by many across the population. That is why we need a health data governance legislation that is underpinned by the principles of human rights and equity.

LEARN MORE ABOUT STRONGER HEALTH DATA GOVERNANCE

We need concerted action to strengthen the equitable governance of health data

Transform Health statement ahead of the 75th World Health Assembly

Ahead of the 75th World Health Assembly, taking place on 22-28 May 2022, Transform Health is calling on WHO and its Member States to endorse a new set of Health Data Governance Principles and to develop a global framework to maximise the public value of health data whilst protecting individual rights.

Transform Health is calling for the development, and subsequent adoption, of a global health data governance framework. We call on governments to:

  • Put health data governance and a global framework on the agenda of the next WHO Executive Board meeting and World Health Assembly.
  • Sponsor a resolution mandating the WHO to develop a global health data governance framework, ensuring it is developed through a fully inclusive process.
  • Endorse the equity and human rights based Health Data Governance Principles – already endorsed by over 90 organisations – and ensure they underpin a global framework.

By taking action on this agenda, Member States have an opportunity to advance both domestic and international health targets and increase public confidence in data sharing. Strengthening the equitable governance of health data, and a global framework to guide this, will be vital to achieving UHC and also essential to get us out of the next pandemic.

Health data is ubiquitous

As health systems and other parts of our lives have become increasingly digital, volumes of health data and health-related data continue to expand. However, national, regional and global rules to govern the collection and use of data have not kept pace with the growing potential for data to support better health and wellbeing, or the potential harms arising from data misuse.

Transform Health is calling for the development, and subsequent adoption, of a global health data governance framework.

The COVID-19 pandemic has demonstrated the importance of timely, accurate and disaggregated health data, and the value of sharing data within and across borders. At the same time, misinformation and cases of health data being used for political and commercial gains have highlighted the need to build public trust in data systems and safeguard personal data.

Also read: Maximising The Value of Health Data For Public Good: Launching The Health Data Governance Principles

Better data governance key to advancing health goals

As Governments meet in Geneva this month, health data, and how it should be governed, must be front and centre of discussions. Maximising the public health value of data is key to accelerating progress towards all health goals. Without coordinated approaches to data governance, grounded in ‘Health for All’ values such as equity and human rights, the benefits of data and digital transformations will not be shared throughout society.

These issues must be central to discussions on progress towards the health-related Sustainable Development Goals and WHO’s triple billion targets on accelerating universal health coverage (UHC), increasing protection from health emergencies and improving health and wellbeing. Health data governance must also be on the agenda of World Health Assembly strategic roundtables on reorienting health systems towards primary health care; the economics of health for all; and emergency preparedness, response and resilience.

Why we need a global health data governance framework now

Although some countries have developed health data governance policies and legislation, such instruments often tend to be narrow, addressing specific issues such as privacy and data security. Approaches to health data governance rarely consider equity and the full spectrum of human rights, or take a comprehensive view of health and wellbeing, thus failing to ensure that the best possible health value is created through data and digitalisation. Furthermore, existing policies rarely lend themselves to effective regional or international cooperation and exchange of data for public good.

A comprehensive global framework on health data governance – framed around key objectives of protecting people; promoting health value; and prioritising equity – would guide countries towards a common vision of health data collection and use that maximises public benefit within and across borders, whilst safeguarding individual rights. Such a framework must be grounded in core equity and human-rights principles.


Read and endorse the #HealthDataPrinciples

WHA SIDE EVENT, 25TH MAY AT 18:00

Representatives of WHO Member States are invited to attend a WHA side event on ‘Strengthening the Governance of Health Data’ at 18:00-19:30 CET on 25th May at the InterContinental Hotel Geneva. The event is co-hosted by Transform Health, FIND, Fondation Botnar, PATH, PharmAccess, PMNCH and UNITE. You can also register to view the event online. For more information, contact [email protected]

Register to attend in Geneva
Register to attend online

Equipping the Incoming Health Workforce to Operate in a Digital Age

The International Federation of Medical Students’ Associations (IFMSA) and Transform Health welcome the inclusion of digital health in the final Declaration of the Health Workforce Conference 2022, held between 07 and 09 February in Nairobi, Kenya.

The education and training needs of the health workforce are critical in delivering quality care and responding to the health needs of the population. Those students coming through the education and training systems at the moment will be the frontline staff delivering healthcare during the decades to come and therefore vital to ensuring governments are able to achieve their universal health coverage commitments. The rapid use and scale up of digital technology across all areas of healthcare along with the increased generation and use of data is throwing up new challenges and opportunities for health workers. To respond to these challenges and seize the opportunities presented by digital technology, students will need to be trained in the use of digital technologies and the management of data as part of a forward looking curriculum aimed at equipping future health workers to operate in a digital age.

Digital health technologies will never substitute the critical role of health professionals, however they can assist them to improve patient outcomes, extend coverage and lower healthcare costs. Health workers must be properly trained in the management and use of digital health technologies and the use of data to improve health outcomes, otherwise these technologies risk becoming an additional burden on frontline staff.

Digital health technologies will never substitute the critical role of health professionals, however they can assist them to improve patient outcomes, extend coverage and lower healthcare costs.

IFMSA and Transform Health commend the leadership of the Kenyan government and its partners in ensuring this issue is prioritised. We look forward to collaborating with the government on the work plan as a follow up to this important event.

Background on the Health Workforce Conference

The aim of this inaugural conference hosted by the Ministries of Health and Education of Kenya along with the Kenya Medical Practitioners and Dentists Council was to allow different stakeholders to share knowledge and experiences on how to harmonise the curriculum and training of health care professionals so as to strengthen the capabilities of health professionals to support Universal Health Coverage.

The conference, aimed at senior-level policy makers from the East Africa Region, is an important contribution to the broader discussions on the interventions and support that are necessary to equip health workers to achieve universal health coverage in a digital age.

Also read: Digital health spells the future of effective pandemic response and UHC attainment in the Global South: Perspectives from Kenya

We Need Stronger And More Equitable Governance Of Health Data!

Transform Health asks from the WHO Executive Board

Technology is rapidly changing the world we live in. As our health systems become increasingly digitalised, this has increased the amount of health data that is collected and used. This has sparked the need for stronger – and more equitable – governance of that data.

Though some countries have developed health data governance policies and legislation, this legislation does not lend itself to regional or international cooperation and exchange of data for public good. There is currently no comprehensive, globally unifying or agreed principles, nor a global framework, to guide the governance of health data, which can unify public health approaches and systems around the objective of equity and UHC. Global alignment will promote a common understanding of what data governance should accomplish.

Putting equity, rights and trust at the centre of health data governance

A global health data governance framework is urgently needed. Such a framework must be underpinned by equity and human-rights based principles. This would ensure that national legislation and regulation on the effective use of health data and data for health has full public support and confidence, will provide researchers and health professionals the clarity and support they need to do their work, and will support the use of digital technologies and data for public good.

Transform Health and partners are stewarding the development of a set of Health Data Governance Principles, which bring a human rights and equity lens to the use of data within and across health systems. The Principles are oriented towards supporting sustainable and resilient public health systems that can deliver UHC. Developed through an inclusive, bottom-up process (including a recent public consultation), they bring together contributions from over 200 experts across diverse geographies, sectors and stakeholders. They will be available for early endorsement later this month.

Though some countries have developed health data governance policies and legislation, this legislation does not lend itself to regional or international cooperation and exchange of data for public good.

Also read: Making the Case for Stronger Health Data Governance – Transform Health

A critical moment for action 

We call on governments to back the need for stronger health data governance by supporting the development, and subsequent adoption, of a global health data governance framework. This year’s 150th Executive Board meeting and the 75th World Health Assembly in May provide key opportunities to drive progress on this agenda.

As members of the WHO Executive Board meet this week, we urge them to:

  • Propose the inclusion of an agenda item on health data governance in the agenda for the 75th World Health Assembly in May and call for the development of a global framework, including sponsoring a World Health Assembly resolution on this.
  • Champion the need for equity and human rights-based Health Data Governance Principles,  ensuring these underpin any global framework.
  • Sponsor a Member State side event on health data governance at the World Health Assembly.
Governments must also ensure that health data governance is prioritised as part of other key global, regional and national agendas and platforms, such as the G20, UNGA, key regional meetings, among others.
These are vital steps to ensure the participatory, equitable and efficient governance of health data so that all people can benefit equally from the collection and use of health data, in support of UHC.

 
We call on governments to back the need for stronger health data governance by supporting the development, and subsequent adoption, of a global health data governance framework.

A Key Advocacy Milestone: The Launch Of The Governing Health Futures 2030 Report

A reflection on the GHF2030 Report by Transform Health

Transform Health welcomes the launch of the Lancet / Financial Times Commission report, Governing health futures 2030: Growing up in a digital world. This important piece of research highlights the potential of digital health when applied in an ethical and equitable manner, and within strong governance and accountability frameworks. The report also raises an important set of challenges that, if not addressed, will lead to a further health and digital divide, and further exacerbate existing exclusions and power differentials globally, nationally and sub-nationally.

View the Governing Health Futures 2030 report on The Lancet
Transform Health stands by the recommendations of the report as they relate to closing the digital divide by 2030, stimulating investments to ensure the transformation of health to achieve UHC, increasing participation of communities on the design and implementation of digital health policies and technologies. We also support the call for the establishment of decentralised governance models that involve cities and regions and ensure interoperability, clear distribution of roles and responsibilities across the different tiers of government and common standards for data management. We look forward to working closely with the Commission and taking these recommendations forward, further enabled by two Commissioners, Dykki Settle and Nanjira Sambuli, also serving as the Co-Chairs of Transform Health.

 

“Developing and implementing digital technologies alone cannot lead to universal health coverage. Building the right enabling environment, with supportive policies, regulation and investments is crucial to allow digital technologies to transform health systems. The Report’s focus on investing in the enablers of digital transformation of public health is a welcome one,” says Dykki Settle, Transform Health Co-Chair and Commissioner of the Lancet & Financial Times Commission.

 

Transform Health stands by the recommendations of the report as they relate to closing the digital divide by 2030, stimulating investments to ensure the transformation of health to achieve UHC, increasing participation of communities on the design and implementation of digital health policies and technologies.

 

Transform Health welcomes the call for stronger health data governance. Current ambiguities in data legislation and regulation, and media reports of data breaches across both government and the private sector is leading to a trust deficit between individuals and governments in particular. There is a desperate need for clear international rules and standards in relation to the collection, management, use, storage and disposal of health data and data for health to ensure this is done in an equitable manner where the rights of individuals are respected, protected and upheld, while allowing data to be used for public good. To achieve this, governments need to agree to a set of global standards on health data governance, such as a global health data governance framework, that can then be implemented at national level. This health data governance framework needs to be based on a set of core principles such as those developed by Transform Health and its partners.

 

“People must be involved in the decisions over who collects their data and how it is being used. Meaningful community engagement mechanisms must be integrated into the architecture of data governance models, including ensuring that refusal to participate in digital solutions does not deny communities the right to affordable, accessible and quality healthcare. The rights-based approach to the governance of health data in the Report reinforces the call for a global governance framework,” says Nanjira Sambuli, Transform Health Co-chair and Commissioner of the Lancet & Financial Times Commission.

 

Transform Health is committed to working with partners over the next 10 years to:

 

  1. Build consensus by bringing people together to champion digital transformation, particularly at regional and national level. As a first step, we have set up Digital Health Week, as a week of action to enable organisations and institutions working on digital health to come together, celebrate its successes and call for greater political action to drive the digital transformation of health systems to achieve Universal Health Coverage (UHC) by 2030.
  2. Work with governments, the private sector, professional bodies and civil society to influence country level change through our national coalitions.
  3. Advocate for stronger governance of health data for public good.
  4. Campaign for increased and coordinated funding for digital health at all levels.

The Lancet / Financial Times Commission report, Governing health futures 2030: Growing up in a digital world, will be an important resource that we will use in our influencing work to shape the public conversion across different countries.

G20 Health Ministers’ Meeting: Where Is The Action?

A Transform Health Statement in response to the G20 Health Ministers’ Declaration

When G20 Health Ministers met on 5 and 6 of September in Rome, they must have felt the weight of history hanging on their shoulders. Never has health been higher on the public and political agenda, never has there been such a moment for Health Ministers to show leadership and stake out a pathway from the current crisis and towards a future that guarantees health for all by leveraging digital technologies and data. Never has there been such an opportunity to rethink the way we approach health, to learn from and to deepen the digital transformation of health systems and to use data in more effective ways to ensure the Sustainable Development Goal of Universal Health Coverage is met by 2030.

 

The G20 Health Ministers’ Declaration did make lofty references to the need for “transformative resilience” and did acknowledge the need to “foster innovative gender-responsive approaches using digital technologies and other innovations, in a way that protects personal health data, to improve access, monitoring and real-time support, and to provide better quality, more personalized, and specialized health services”.

 

Never has there been such an opportunity to rethink the way we approach health, to learn from and to deepen the digital transformation of health systems and to use data in more effective ways to ensure the Sustainable Development Goal of Universal Health Coverage is met by 2030.

 

The Declaration goes on to recognise the benefits of “further integrating digital health, including through: improving health information systems and information exchanges in a way that respects patient privacy; enhancing data analysis and reporting mechanisms; by encouraging and supporting the interoperability of digital health tools; by reinforcing the adequate training of the health workforce to strengthen health system capacity and investing more in improving health literacy to address the epidemiological vulnerability created by health and social inequities and inequalities and for supporting equitable access to health services for all people throughout the life course.”

 

Health Ministers also recognised the importance of data and committed to “improving rapid and transparent research, data, information and material access and sharing, in line with applicable laws and regulations at the national and international levels, necessary to prevent, detect, and respond to future potential health emergencies.” Further, Ministers recognised the regulatory barriers – a consequence of WTO rules – to the effective operation of global supply chains for essential medical goods.

 

Also read: Will The G20 Deliver Better Health For All In A Digital Age?

 

Transform Health believes that the obstacles posed by nonexistent, inadequate or inappropriate regulation is one of the main stumbling blocks to the sustainable adoption at scale of digital technology and the use of data for public good that will deliver UHC by 2030, especially in low and middle income countries. Unless governments develop effective regulation, legislation and policies, as well as funding modalities to enable digital technologies to be fully integrated into health systems, then we will continue to see a widening digital divide exacerbating, rather than alleviating, persistent inequities in health. Transform Health is calling on G20 leaders to start addressing the enabling environment that will equitably deliver the transformations promised by digital technology and data, by spearheading and supporting a systematic review of the current legislative landscape, particularly in low and middle income countries.

 

Transform Health believes that the obstacles posed by nonexistent, inadequate or inappropriate regulation is one of the main stumbling blocks to the sustainable adoption at scale of the digital transformation of health.

Health Ministers recognise the important role of the health workers. The Declaration mentions the need for more workforce training (paragraph 23) but this needs to be accompanied by changes in the incentive structure to ensure adoption of digital technologies that will allow healthcare workers at all levels, and particularly frontline health workers to work more effectively and in a more integrated manner using digital tools. This is especially important in contexts where there are severe shortages of health workers. While digital technologies can and should never replace or be an excuse for underinvestment in the recruitment and training of health workers, they are an effective means to bridge a gap and can help extend access to, quality and affordability of care.

 

Transform Health urges G20 health ministers and heads of state to commit to greater investment in and support for the digital transformation of health systems and the effective use of data to achieve UHC, as well as strong and fair policies that will ensure equitable benefits for all. In a world that is increasingly digital-first we cannot ignore the risks of a growing digital divide in health which is exacerbating existing health inequities.

 

‘Transformative resilience’ can only be achieved through the effective use of digital technology and data. G20 countries themselves have made great progress recently in digitalising their own health systems. Examples range from India’s National Digital Health Mission, the establishment of the Digital Transformation Office (DTO) by the Indonesian Ministry of Health, Saudi Arabia’s E-Health Strategy and 5 year Roadmap, France’s Health Data Hub, Brazil’s Digital Health Strategy, and South Africa’s Health Patient Registry System.

 

What is needed now is a concerted effort to work together to ensure all countries and regions are able to bring their health systems into the digital age, and to develop the necessary normative frameworks that will allow these digital technologies to flourish and deliver for everyone. The first step is a global agreement on the use of health data as a means of establishing a new social contract between people and governments that will create the needed trust required for people to be willing to hand over their health data and data for health in service of the greater public good. To achieve this G20 Health Ministers need to support the creation of a global health data governance framework at next year’s World Health Assembly that will enable them to translate their recognition of an urgent need into concrete action.

 

What is needed now is a concerted effort to work together to ensure all countries and regions are able to bring their health systems into the digital age, and to develop the necessary normative frameworks that will allow these digital technologies to flourish and deliver for everyone.

 

The current G20 Health Ministers’ Declaration highlights Health Ministers’ awareness of major health issues of our age and the importance of addressing them. This is a good first start – however, awareness alone will not deliver the urgent changes we need to see to ensure the world is able to meet its UHC target by 2030. That can only be achieved by working together to ensure the accelerated adoption of digital technology and the effective use of data to enable health systems to deliver for everyone.

 

Read Transform Health’s full set of recommendations to the G20.