Health data governance – a chance to get it right

On 23rd March, Zahara Ndagire from Uganda went to her local health facility to request her electronic health records. She was denied. On 24th February, Séri Joseph Bogou from Ivory Coast requested his records from his local hospital and was also denied. That same month Shannon Thom from Canada also tried to access her electronic health records. She was also unsuccessful.  

Across the world, the level of access and control people have over their electronic health data is limited by the lack of clarity by patients and providers of their rights and responsibilities in relation to people’s health information. This leaves people feeling confused and concerned over who has their health data, how it is being used and for what purpose. Ultimately this risks eroding trust between people and health providers. As Zahara says: 

“I realised that I really know very little about where my data is held and how it is used…I have no trust, I am very concerned about how my data is being managed”. 

Grace Njeru, from Kenya was not able to get hold of her health data as she was told that it is not held in one place. “The Pharmacist told me that you can’t get all your health records, if it’s the lab you need to go to the lab, if it’s consultation, you need to go to consultation. (…).  My experience was confusing, when I went to the receptionist, he didn’t know what I was talking about; I think I was the first person to ever ask for health records in that hospital.” 

Shannon Thom from Canada had a similar experience: “My electronic health record is broken into very specific types of information held by six different bodies. In order to access these records, I need to [provide] the types of tests and the dates (…) which was difficult to know without access to the health records. So without the records I couldn’t access my health data.”

According to some estimates, 30% of all data produced is generated by the healthcare industry. Yet most people remain unaware of how this data is collected, who is collecting it, where it is being stored, what it is being used for, and why. Health data remains poorly regulated at national level. 

The current lack of agreed regulatory standards to govern the collection and use of health data creates uncertainty in the way health data can be used within countries and across borders, and means that data is not being maximised for public good purposes (e.g. for research, innovation, health planning). This risks leaving many people behind when it comes to developing new medicines, technologies or planning for the provision of health services to the wider population. 

Between 21st and 30th May, Ministers of Health from around the world will gather in Geneva, Switzerland for this year’s World Health Assembly (WHA) to discuss important health challenges and to set the priorities for the World Health Organisation. Transform Health and its partners are calling on governments to prioritise the development of a global health data governance framework that would form the basis for national legislation on how health data is collected, managed, used, stored and disposed of. 

“Transform Health has been a strong advocate for the need for a global set of standards on health data governance, which we feel needs to be considered as more than just a sub-category of data governance. Health data lies at the intersection of personal privacy and security, and the protection and well being of the population. Therefore the need to ensure a regulatory system regime that people know about and trust, and where institutions can have public approval and support to access and use our most intimate personal data for the public good, while ensuring our rights and privacy are protected.” says Mathilde Froslund, Executive Director of Transform Health.

These standards need to be underpinned by equity and human rights-based principles such as the Health Data Governance Principles, which have already been endorsed by over 140 organisations and governments, and developed through an inclusive process, including with civil society and communities. Such standards, articulated within a global health data governance framework, would inform and strengthen national legislation and also govern health data sharing across countries. This would lead to stronger and more equitable health systems, improved health emergency and pandemic response, improved research and innovation and would advance UHC goals. Importantly, this would improve public trust in health data systems, which is critical to foster data use for public good. 

 

Background

Earlier this year, Transform Health launched the My Data Our Health, a global campaign led by community based organisations, to raise awareness and galvanise action on the issue of health data, and to encourage a public and political conversation around questions of health data collection and use.

About Transform Health 

Transform Health is a global coalition of more than 130 organisations advocating for the equitable digital transformation of health systems, to achieve health for all.

Launch of the #MyDataOurHealth campaign: making health data governance everybody’s business

The issue of health data governance gathers little attention and evokes little emotion among the public or politicians, most of whom see it as a byproduct of health checkups or medical examinations. However, the way health data is collected, managed and used, by whom and for what purposes, should concern us all. Health data lies at the heart of who we are as individuals, as groups, and as a species, more so in a digital age where large parts of our identities are stored and reflected in disparate and composite data sets, including highly personal and private information about our health, well-being, lifestyle and identity. Despite the risks of misuse, as well as the potential benefits of widespread, ethical and effective data sharing, health data remains a poorly regulated area.

Transform Health has been calling for a global framework that governs the use of health data for the past two years. We are taking this issue to the public through the launch of our first mobilisation campaign – My Data, Our Health. The campaign aims to  build public and political understanding of the issue, encourage reflection on how much control and access we have over our personal health data, and to press for the development of a global health data governance framework that regulates the collection, storage, management, sharing and disposal of health data. These standards needs to be underpinned by equity and human rights, captured in the Health Data Governance Principles, which have been endorsed by over 140 organisations and governments. Governments can support a set of common standards by backing calls for a resolution on the development of a global framework at the upcoming World Health Assembly and High Level Meeting on Universal Health Coverage (UHC). Governments should ensure any resolution on the development of such a framework include a transparent and inclusive process that meaningfully engages civil society organisations. 

In the week leading up to International Data Privacy Day (28 January 2023), Transform Health and 28 partners from East and West Africa launched the My Data Our Health campaign through a series of activities and public announcements. To enable partners to share and adapt key messages of the campaign to suit local contexts and priorities, Transform Health shared the Communications & Engagement Toolkit that allowed partners to share, edit and create their own messages from the campaign in both English and French.

 

Organisations circulated information on the campaign through their networks, ensuring a broad reach across both West and East Africa regions. The Tanzanian Network of Women Living with HIV and AIDS, for example, circulated details of the campaign to its network of 200 CSOs, while EANNASO sent out information on  the campaign through the newsletter, to its 5000 CSO members spread across seven countries: Kenya, Uganda, Tanzania (including Zanzibar), Rwanda, Burundi, Ethiopia, and South Sudan. 

In Uganda Engendering Gender Uganda’s  social media campaign achieved a cumulative reach of over two million people. “I am proud to say that we achieved our goal and more. Our campaign reached thousands of individuals and sparked a much-needed conversation about the importance of being informed and vigilant about our health data. We received a positive response from many people who were grateful for the information and resources we provided,” said Salome Atim, Executive Director of Engendering Gender Uganda.

The response to the launch of the campaign demonstrates the depth of feeling and the appetite from people to engage on this issue: ”Accessing my health data still remains a challenge in my country Tanzania which has no centralised e-platform to store all my health data. This creates a barrier for me owing to the fact that I cannot access all my health data from one health facility. This is why I joined Transform Health – to advocate for the My Data, Our Health Campaign, for a stronger regulatory framework based on common standards in Tanzania,” said Petrider Paul, Executive Director of Imara Leadership Initiative.

Participating organisations have been mobilising their supporters to take part in the #Where’sMyData? campaign action, inviting people to visit their health centres and ask for their health data. Some of their experiences, captured in this short video, provide a vivid sense of the range of experiences people had in trying to access their health data. So far over 200 people have registered to take part in the Where’s My Data? campaign action.

On 7th March, Transform Health held a high-level event at the Africa Health Agenda International Conference (AHAIC) to address the critical need for a common set of global standards on health data governance. The session highlighted the lived experiences of youth, women and other marginalised communities and invited panellists to reflect on actions governments could take to secure greater ownership and privacy over personal health data, and enable its safe sharing for public benefit purposes. 

Transform Health launched two #MyDataOurHealth augmented reality (AR) filters for Instagram and TikTok at the event. These filters are enabling social media users to spread word about this issue in a fun and interactive way on Instagram and TikTok.

https://www.instagram.com/p/Cphv-_tj77T/

You can find the filters on our Instagram and TikTok ‘Effects’ page by looking up our handle @trans4m_health. This short guide has instructions on how to download, use and share the filter. Help us promote the issue of health data governance by using it on your platforms!

Health data governance is everyone’s business. It contains the most intimate details of our lives. It cannot be left to technical experts to determine how our health data should be collected, managed, used, stored and disposed of.  We all have an interest in shaping a global regulatory framework to ensure it is protecting us as individuals and serving the common good, nationally and globally. 

LEARN MORE ABOUT THE MY DATA, OUR HEALTH CAMPAIGN → 

Building Trust in Health Systems: Why The WHO Executive Board Must Prioritise Health Data Governance

At the end of January, the WHO Executive Board is meeting to decide the agenda of the World Health Assembly and any resolutions to be considered. It is crucial that the pressing issue of health data governance is tabled and that a resolution to develop a global framework is on the agenda for the 76th World Health Assembly in May 2023.

Health data has emerged as an essential tool for strengthening health systems and responding to future health challenges. 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 well-being, or the potential harms arising from data misuse. To harness the potential, and manage the risks, of health data sharing within and across borders, countries must work together to develop a set of common regulatory standards for the governance of health data.

To build trust and maximise the public benefits of health data, Transform Health calls upon Member States to commit to the development of a global health data governance regulatory framework, based on a set of equity and human rights-based Health Data Governance
Principles. Such a framework, endorsed by governments through a World Health Assembly resolution, would establish an agreement between nations on a set of common regulatory standards for the governance of health data, which can be contextualised and domesticated
through national legislation. This would ensure that health data is shared and used for the public good whilst protecting individual rights, and lay the foundation for improved public trust in health systems – one 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 data for public good.

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

It is vital that a global framework is developed through a transparent and fully inclusive, multistakeholder process, including the meaningful engagement of civil society, communities and youth. This would ensure the inclusion of perspectives and expertise of those whose data is
being collected and used.

Transform Health is convening a breakfast briefing for member states on health data governance during the WHO Executive Board Meeting in Geneva, on the 31st of January. Find out more and register here.

As the WHO Executive Board convenes next week, Transform Health urges Member States to:

  • Propose the inclusion of health data governance on the agenda for the 76th World Health Assembly in May 2023 and support a resolution mandating WHO to develop a global framework.
  • Participate in a Member State briefing on health data governance being organised ahead of the Executive Board meeting by Transform Health, AeHIN, RECAINSA, PATH and HELINA on 31 January.
  • Endorse the equity and human rights-based Health Data Governance Principles ensuring these underpin a global framework.
  • Sponsor a Member State side event on health data governance at the World Health Assembly.

Read more: Growing demand for action on Health Data Governance: Will the World Health Assembly respond?

Over 150 organisations have signed on to a letter to the WHO, calling for swift action on the steps above. Transform Health and our partners urge governments not to miss this opportunity to unlock the power of data for health, nor the opportunity to harness the digital transformation of health that can help deliver health for all.

Building an enabling environment for Health For All in the digital age

Transform Health’s reflections on UHC Day 2022

World leaders have less than eight years to make good on the promise of health for all by 2030. Unfortunately, we are far from being on track. 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 – but only if they are developed and used in ways that are aligned with public health values and human rights.

In 2022, Transform Health’s work has focussed on enhancing two key aspects of the enabling environment for UHC in the digital age: stronger health data governance; and increased and better coordinated investments.

Regardless of their level of digital maturity or economic development, countries across the globe are already demonstrating how including digital health as part of their UHC approach can lead to expanded coverage of health services and improved health outcomes. However, efforts to assess the digital health readiness of countries have highlighted ongoing challenges for all countries in establishing an enabling environment for digital health – including appropriate governance structures, strong accountability mechanisms, regulation and policy, strategic investments, and strong political will to catalyse the equitable and sustainable digital transformation of their health systems.

In 2022, Transform Health’s work has focussed on enhancing two key aspects of the enabling environment for UHC in the digital age: stronger health data governance; and increased and better coordinated investments.

Stronger health data governance to use health data for good

As our health systems become increasingly digitalised, the amount of health data being generated, collected and stored has risen exponentially. Who determines how this data is collected, managed, used, stored and disposed of? How do we ensure ownership and control and protection of health data?

There is currently no comprehensive, globally unifying framework to guide the governance of health data. Without the right guiding framework, data can also be used to marginalise and exclude certain groups from health benefits (such as health insurance) or services (sexual reproductive health rights).

Recognising this gap, Transform Health has been calling for a global health data governance framework to mitigate some of these challenges. Such a global framework must be underpinned by human rights-based Health Data Governance Principles to ensure that individuals and communities are protected, equity remains at the centre, and primary health systems are strengthened through the effective management of our health data.

In order for such a framework to be developed, and then adapted into national contexts, health data governance must be placed on the agenda of the upcoming WHO Executive Board meeting in January 2023, and the World Health Assembly in May 2023. We have drafted a letter to Dr. Tedros Adhanom Ghebreyesus, the WHO Director-General, that has been signed by over 130 organisations to date, with this demand. The letter remains open for signatures as we build momentum towards the World Health Assembly next year.

Sign the letter demanding action for health data governance

Investing in digital health transformation

In order for countries to urgently scale up their digital health infrastructure and capacity, the funding ecosystem must identify digital transformation of health as an important path to UHC. One of Transform Health’s three key objectives is advocating for increased and better coordinated domestic and international financial investments to support the equitable, inclusive, and sustainable digital transformation of health systems in low and middle income countries, which is in line with one of the key areas to the commitment of UHC ‘Invest more, invest better – sustain public finances and harmonise health investments’ .

At the World Health Summit 2022 in Berlin, Transform Health launched a new report – Closing the digital divide: More and better funding for the digital transformation of health to frame the thinking on how to guide investments and action for digital health transformation in low- and lower-middle income countries. It lays out concrete recommendations for national governments, private sector, and international donors to increase and improve investments towards building digitally-enabled health systems that improve health outcomes for all.

The report identifies nine priority areas for digital health investments, ranging from health financing to data governance. Based on a costed estimate of these nine areas, it estimates an annual investment of 2.5 billion USD over the next five years as a minimum requirement for progress to be made towards digital health transformation in low and middle-income countries. The true investment requirement will ultimately be determined country by country, based on costed plans, and will need to be complemented by additional investment to increase digital connectivity and usage among the population, as well as investments to address the wider enabling environment.

To take forward the recommendations of the report, it was complemented by the publication of policy briefs with targeted recommendations for key stakeholders – the government, international donors and development partners and the private sector.

Read the report and policy briefs

Digital health for UHC

The digital transformation of health systems has become an integral part of the narrative on how we can advance the world’s progress towards Universal Health Coverage by 2030. With only eight years left to achieve the goal, we must think beyond the disruptive power of individual technologies and tools, and instead ensure that we have the right enabling environment for this digital transformation to be inclusive, sustainable and rights-based.

This UHC Day marks one year since Transform Health released its report The Case For Digital Health: Accelerating Progress To Achieve UHC. that addressed how digital technologies can support the achievement of UHC, but also the barriers that need to be overcome in order for the digital technologies and data to improve – and not undermine – health equity.

In September next year, The UN General Assembly (UNGA) will convene a high level meeting on UHC. It is an important opportunity to galvanise political support and global action for the digital transformation of health to achieve the UHC targets set for 2030.

Transform Health will continue to advocate for an inclusive and sustainable enabling environment at national, regional and global levels in 2023 at key moments. If you wish to get involved, email us!

Digital Health Week 2022 – Bringing stakeholders together to bridge the technical-political divide

Developing an enabling environment for the digital transformation of health requires sustained collaboration between technical experts, governments, research institutions, civil society organisations and patients groups and communities in order to build systems that respond to everyone’s needs.

This year’s Digital Health Week, held between 10 and 16 October, focused on the theme of ‘bridging the technical-political divide’. The aim of Digital Health Week 2022 was to encourage organisations to move out of technical and corporate silos and to work together to ensure an effective enabling environment for the digital transformation of health, to deliver on the promise of health for all by 2030.

Transform Health and partners focussed on the issue of health data governance and the need for a set of common global standards that all countries could adopt. We launched the ‘Take Action for HDG’ advocacy toolkit for individuals and organisations to take action – for example, by writing to their health ministries and amplifying the messages on social media.

Digital Health Week 2022: A Look Back

This year over 90 organisations actively engaged in Digital Health Week – with over 70 organisations hosting more than 90 events and 20 organisations making/reaffirming commitments to drive forward the digital transformation of health systems in their various regions and contexts.

Fostering consensus: Digital Health Week events

Multistakeholder conversations were a key part of the 90+ Digital Health Week events, with many events featuring speakers from varied stakeholder groups, such as national governments and institutions, regional bodies, medical professionals, private sector representatives, research institutions, and community voices.

Representatives from the various government Ministries of Health – including Ethiopia, Zanzibar, Indonesia, Tanzania and Kenya – took part and organised events. The Ministry of Health in Ethiopia took the lead in organising a week-long series of activities including four virtual events that culminated in a grand in-person conclave on digital health transformation in Ethiopia.

Organisations also used the moment to announce campaigns and engage with their communities. The Global Alliance for Improved Nutrition (GAIN) Indonesia hosted an in-person event that engaged youth on their nutrition choices and received over a hundred signatures from young people for their campaign. PMNCH similarly launched the #1point8 global campaign for young people during Digital Health Week. In Latin America, RECAINSA hosted the Digital Health Forum 2022 during Digital Health Week, with a series of lightning talks, panel discussions and workshops that engaged digital health professionals in Latin America on key actions needed for greater collaboration and learning in the sector. STOPAIDS and Restless Development held a consultation for young people on human rights norms and standards that apply to health in the digital age.

New digital health initiatives and services shared their success stories and learnings. In Senegal, IT4LIFE presented WeerWi: the first mobile app to track menstrual cycles in francophone Africa. In South Africa, the Taboobreaker Association presented the LoveLand app that offers a gamified approach to teaching sexual and reproductive health information. Ayder Comprehensive Specialized Hospital shared roadmap to implementing a replicable e-Health Architecture for health facilities to boost interoperability between national health systems in Ethiopia.

Pledging progress: Digital Health Week commitments

Organisations used the global moment as an opportunity to make commitments towards digital transformation of health in their regions – whether through programs, services, thought leadership, capacity building, mobilisation of communities or financial resources.

20 organisations made new commitments, or reaffirmed commitments made in 2021 by updating on the progress made since then. Here are a few notable new commitments:

  • By 2025, Cofpak will collaborate with healthcare stakeholders in Kenya to accelerate integrated electronic medical record (EMR) uptake to over 50% of healthcare facilities in Kenya to enhance the quality of care.
  • By 2024, Humanity & Inclusion will be deploying OpenTeleRehab, an open source, multidisciplinary, telerehabilitation software in 3 additional countries to improve access to rehabilitation services and facilitate discharge, transition of care and follow-up.
  • By 2025, doctHERs will integrate primary/secondary/tertiary healthcare data into an open-source database with trends obtained primarily through our existing tele-health/smart clinics and secondly through collaborative measures with JCI accredited hospitals to improve the population-level awareness and quality of healthcare services delivered by 5000 female frontline/community healthcare workers across Pakistan.
  • By December 2022, the Ludwig Boltzmann Institute for Digital Health and Prevention will publish a guiding framework for creating a comprehensive strategy for mHealth data sharing, privacy, and governance in low- and middle-income countries (LMICs) underpinned by the Health Data Governance Principles.

Sharing stories: Digital Health Week community

Digital Health Week was a moment for individuals and organisations to share their thoughts, learnings and concerns about digital health transformation in their respective contexts. Nearly 11,000 people interacted with #DigitalHealthWeek related content on social media, and the hashtag was viewed 7.5 million times.

We saw a plethora of articles being published during Digital Health Week, from making digital tools like pulse oximeters more inclusive so as to read all skin tones, published by Every Breath Counts, to a comprehensive overview of digital health in West Africa by the newly launched Transform Health West Africa coalition. Interesting perspectives where shared, such as this DevEx op-ed on how mobile money can help get to Universal Health Coverage and Aapti Institute’s fresh perspective on health data governance using data stewardship approaches. Transform Health Kenya created a series of videos on digital health transformation in Kenya. All these resources can be found on the Community page of the Digital Health Week website.

Reproductive Health Network Kenya hosted a Twitter Spaces on digital health as self-care in promoting access to sexual and reproductive health, that was attended heavily by young people across Kenya. Other organisations joined the global conversation by sharing their key messages and priorities within digital health transformation, reaching a global audience with the hashtag.

Driving transformation through consensus-building

In its second year, Digital Health Week continued to see active engagement from various stakeholders, demonstrating the great appetite for collaboration and shared learning. It drives home the need for more such multistakeholder discussions to bridge the gap between technical experts and political decisionmaking.

Transform Health is committed to furthering the impact of Digital Health Week as a global moment to foster important conversations on digital health and its role in achieving Universal Health Coverage. We look forward to your feedback on Digital Health Week, so shoot us an email with your thoughts!

About Digital Health Week

Digital Health Week is a global week of action that aims to put digital health on the public and political agenda. It is a moment for us all to come together to build partnerships, share our digital health successes and challenges, and chart a roadmap towards achieving health for all.

It has now been hosted for two years in a row, to great success and engagement by a global community of organisations, institutions, governments and individuals interested in the role of digital health in achieving Universal Health Coverage. Organisations engage in the week of action by telling their stories of digital health – hosting events, making public commitments and amplifying digital health news and content in the media. Digital Health Week is a moment open to all, and is not a Transform Health branded event.

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.

Maximising the value of health data for public good: the Health Data Governance Principles

On World Health Day, Transform Health is shining a light on health data, with the launch of the Health Data Governance Principles – the first global set of principles that guide the use of data in health systems. They are grounded in human rights and equity, and oriented towards supporting resilient public health systems that can deliver health for all.

With the rights of individuals and communities at their core, the Principles are clustered around three key objectives: protect people, promote health value, and prioritise equity. They create a common vision where all people and communities can share, use and benefit from health data


healthdataprinciples.org

Over 200 digital health experts from 130 organisations around the world came together to develop these Principles in an inclusive, bottom-up process that was stewarded by Transform Health. This included governments, international organisations, civil society, research institutions, and private-sector actors. We urge organisations, institutions and governments to endorse the Principles. “The Principles are a public good, available for everyone to use. Transform Health is proud to have stewarded this process, and we encourage governments, technology companies and others who collect and use health data to incorporate these Principles in their work. As an initial step, we are calling on governments and organisations to endorse the Principles and commit to the equitable governance of health data in their work,” said Mathilde Forslund, Executive Director of Transform Health.

Endorse the Principles

One of Transform Health’s core objectives is advocating for a global health data governance framework, and the need for stronger health data governance has never been greater. The COVID-19 pandemic accelerated the use of data. With the exponential increase in the production and use of health data, there are massive benefits for the advancement of personal and public health, as well as risks of widening health inequities and discrimination against marginalised communities. Consensus on the Health Data Governance Principles is an important step towards the creation of a global health data governance framework.

The Principles are intended to be a tool for governments, international organisations, civil society organisations and other stakeholders to advocate for equitable, human rights-based approaches to health data governance at national, regional, and global levels. The newly launched website contains resources – including the Advocacy & Communications Toolkit – that enable organisations to use the Principles in their workplace, organise meetings & events, advocate for a health data governance framework, and amplify the Principles on social media.

Use the Principles
Advocacy & Communications Toolkit

Looking Back on Digital Health Week 2021: What Transpired on the First Global Week of Action for Digital Health

With the United Nations goal of achieving Universal Health Coverage by 2030 less than eight years away, the role of digital technologies in accelerating progress towards providing quality healthcare – by improving the accessibility, affordability, quality and reach of health systems – has assumed fresh importance and is rising up the political agenda.. COVID-19 showed us how digital health – including open and transparent data sharing, telemedicine appointments and the use of other digital tools – could enhance health outcomes. It is important for us to learn from these lessons of the recent pandemic and accelerate the adoption and roll out of digital health technologies both to mitigate the impact of future health crises and to achieve universal health coverage by 2030.

From November 29 to December 3, 2021, over 70 organisations, across 40 countries, from Guatemala to the Philippines, came together to discuss the challenges and opportunities offered by digital health. The first global Digital Health Week, organised by Transform Health, was a resounding success!

During Digital Health Week, organisations hosted events, ran campaigns, published articles, and brought together key stakeholders to discuss how digital health could accelerate progress towards Universal Health Coverage (UHC) by 2030 in their countries and contexts. The multistakeholder conversations at a national level allowed organisations, including governments, to reflect on issues specific to their countries and contexts. The ability to conduct these meetings in local languages also broadened the scope for engagement.

Organisations made commitments setting out how their work in areas of advocacy, capacity building, programs, research and financing will contribute to the digital transformation of health systems in their country or context.

Digital Health Week 2021 A Look Back

Over the course of one week 80 events were hosted and 38 commitments were made across 40 countries by 71 organisations.

More than 10,000 people tuned in to the various events during the week. Online, people engaged with the hashtag #DigitalHealthWeek nearly 7 million times!

For a quick primer, read the Digital Health Week key messages here!

Digital Health Week 2021 Key Messages

Events during Digital Health Week 2021

The 80 events held during Digital Health Week 2021 were hosted by organisations across the globe, including the World Health Organisation, GIZ (German Development Cooperation), the Indonesian Public Health Association (IAKMI) and the Brazilian Association of Telemedicine and Telehealth.

In Latin America, the Central American Health Informatics Network (RECAINSA), hosted the first Digital Health Forum, a space where over 2500 professionals from the public, private and academic sectors converged, sharing their experiences and learning.

Digital Health Week offered participants an opportunity to promote research and findings to a wider audience. For instance, the International Federation of Medical Students’ Associations (IFMSA) shared the preliminary findings of their global digital health survey, which found that the current status of medical education does not provide sufficient exposure to digital health within medical schools globally and remains a neglected area. In another event, the Digital Connected Care Coalition (DCCC) and UHC2030 brought together private sector companies working on digital health innovation to showcase digital solutions from Rwanda, Mexico and the Philippines. They discussed the role of the private sector in digital health adoption and scale.

Digital Health Week 2021 A Look Back
Digital Health Week 2021 A Look Back

Several Ministries of Health also participated in Digital Health Week 2021 in their respective countries, including organising their own events in collaboration with civil society partners. In Lao PDR, the Ministry of Health organised an event in which it identified seven clear priority areas for action in 2022, namely – the elaboration of a digital health strategy, governance, project management, standards, enterprise architecture, eGovernment, and a digitally enabled workforce. During the event, which brought together various digital health stakeholders, the government sought the commitment of participants to carry forward each of the seven priority areas. The stakeholders committed to meeting in early 2022 to launch the plans drafted during the Digital Health Week event.

In Accra, PharmAccess Ghana brought together decisionmakers from key institutions such as the National Health Insurance Authority (NHIA), the Christian Health Association of Ghana, and Health Facilities Regulatory Agency, among others, to build public and political understanding and support for the digital transformation of health systems and the use of data to achieve universal health coverage.

Commitments during Digital Health Week 2021

During Digital Health Week, organisations also made commitments to promote the digital transformation of health through their work – be it programmatic interventions, advocacy measures, capacity building of healthforce workers, or financing digital health interventions.

Digital Health Week 2021 A Look Back

Notable commitments include:

  • Allocating CHF 25 million towards human-rights centred digital health interventions globally.

“Over the next three years, Fondation Botnar is committing to allocate CHF 25 million to a new portfolio of work, including programs, policy, advocacy and partnerships, at the intersection of human rights and digital health. We are determined to ensure that digital health interventions address health inequalities among young people and promote human and child rights-based governance of the use of digital data/platforms and artificial intelligence.”

  • Reaching 36 million people in resource constrained communities in India with telehealth interventions

“Apollo Remote HealthCare Intervention programs have provided health care services to about 16 million people across various projects in India as of July 2021. The aim and target for these programs is to impact an additional 20 million people in resource constrained communities by the year 2025, thus touching the lives of at least 36 million people.”

  • Equipping 32,000 community health workers with digital tools to impact 18 million people in five countries in Sub-Saharan Africa

“Living Goods, with our government partners, will support up to 32,000 digitally-enabled community health workers and supervisors to provide quality health care to up to 18 million people across five countries by 2026. As part of this support, we commit to expanding our use of digital technology and data as tools to strengthen government systems and achieve national impact.

  • Expanding access to care for 400 million people in underserved communities globally by driving digital and technological innovation.

“Philips is committed to improving the lives of 2.5 billion people a year by 2030, including expanding access to care for 400 million people living in underserved communities. To help expand access to care, we are: • Driving digital and technological innovation along the health continuum • Developing new business models and financing solutions • Building strong partnerships within an ecosystem of collaboration.”

See all commitments made during Digital Health Week 2021 here!

Looking Ahead

Digital Health Week will be back in 2022, with more events around the world to champion, advocate, and discuss the role of digital health in delivering health for all. Transform Health will be advocating for the need for a global health data governance framework. Stay tuned for a theme announcement shortly and more information on how organisations can join this global moment.

If you participated in Digital Health Week 2021, we would love to hear your reflections! Leave a message in the comments with what Digital Health Week 2021 meant to you. Follow our channels on Twitter, LinkedIn  and newsletter for the latest news and announcements about how to get involved early in Digital Health Week 2022.

The Case For Digital Health: Report Launch By Transform Health

Transform Health launches the report ‘The Case For Digital Health: Accelerating Progress to Achieve UHC’ at the AI For Good Summit during Digital Health Week.

All countries have committed to extend universal health coverage (UHC) to everyone by 2030. Whilst most countries have expanded access to essential health services, the goal of UHC remains elusive for around half of the world’s population, particularly those living in low and middle income countries.

Innovative approaches are urgently needed to put all countries on track to achieve UHC. There is much excitement and hype about the potential of digital technologies to strengthen health systems and expand coverage of essential health services.

Digitalisation and the use of digital technologies is already an important and growing part of most health systems. However, national governments and international health partners are not yet fully unlocking the potential of digital health to scale up access to primary health care services as a pathway to achieve UHC.

The positive benefits of digital technologies and data for health are not yet being made available to everyone, which risks widening health inequalities. Furthermore, the application of digital technologies, without due consideration of key principles such as equity and human rights, can undermine efforts towards UHC.

ACTIONS TO ACCELERATE PROGRESS TOWARDS UHC

Transform Health has launched a new report that makes the case for digital health and how it can help us to accelerate progress towards UHC. In the report, we explain how digital technologies can support the achievement of UHC but also the barriers that need to be overcome in order for the digital technologies and data to improve—and not undermine—health equity.

View The Report
View Executive Summary

Unleashing the potential of digital health for everyone will require coordinated, multi-sectoral action to close the digital divide and implement UHC-driven approaches to digital health. The report outlines six steps that policymakers and other digital health actors need to take to enable us to achieve health for all in the digital age.

See how countries and health partners are harnessing digital health technologies to advance UHC in our collection of case studies.

View Case Studies

In this digital age, it is unacceptable that half the world’s population are being deprived of essential health care. As we countdown to the year 2030, digitalisation and the appropriate application of digital technologies should be a central part of countries’ approaches as they redouble their efforts to achieve UHC by 2030.

By taking the actions proposed by Transform Health, governments and technology companies can maximise the potential of digital health and allow everyone to realise their right to health.

Public Consultation: Input On The Health Data Governance Principles!

The consultation period is now closed.

Together with partners, Transform Health has been stewarding the development of a set of representative and human rights-based Health Data Governance Principles. Grounded in UHC, the Principles bring a human rights and equity lens to digital health, and are oriented toward supporting sustainable and resilient public health systems. They seek to align stakeholders around core tenets of data governance, to guide behaviours, actions and policies, creating an environment where all people and communities can share, use, and benefit from health data. The principles target governments, developers and other stakeholders that collect and use health data and can eventually be used as a mechanism to hold them accountable to equity and human rights agendas.

 

The current draft of the Principles has been developed and driven by civil society through an inclusive and consultative process. Seven global and regional consultations have already been carried out to gather perspectives and expertise from across geographies, sectors and stakeholders. This public consultation will allow the Principles to be further refined, supported, and endorsed by an even wider audience.

 

View & Download Draft Principles

Draft Principles [ENGLISH]
Draft Principles [FRENCH]
Draft Principles [SPANISH]
The Principles recognise and build on other important principles and initiatives and are aligned with the recommendations coming out of the report of the Lancet and Financial Times Commission on governing health futures 2030, which calls for a more inclusive & principled approach to digital health and “a new approach to the collection and use of health data [that prioritises] protecting individual rights, promoting the public good potential of such data, and building a culture of data justice and equity”.
View FAQs
We welcome partners to provide feedback using the survey below. It is available in English, French & Spanish.

 

We also encourage partners to share information about the consultation with their networks and to carry out their own regional, national or local consultations to gather further insights from diverse stakeholder groups and to share these as part of the Public Consultation. Resources to support local consultations are available below. For any additional questions, contact [email protected].

 

 

TAKE THIS SURVEY IN ENGLISH, FRENCH AND SPANISH. [[NOW CLOSED FOR SUBMISSIONS]]

Resources to support local consultations

• Sample agenda to host your own local consultation
• Presentation of the draft Principles
• Guiding questions

Tweet to us at @Trans4m_Health to ask us about the Principles, and amplify your participation in this consultation process by downloading and sharing this poster on Twitter (add your organisation’s logo to the top left). You can also click here to tweet about the Public Consultation, to ensure it reaches as diverse an audience as possible!

We look forward to receiving your input.