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.

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A post shared by Transform Health (@trans4m_health)

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.

Policy Brief: Strengthening Health Data Governance Benefits All

Transform Health believes that digital technology and data if effectively and equitably deployed, are enabling forces that can strengthen health systems and help people to attain and maintain good health and wellbeing.

The way the world governs health data has never been more pivotal than it is in this digital age. To create an environment where all people and institutions can share, use, and benefit from health data, an inclusive and collaboratively developed global framework for the governance of health data is needed that realises health data as a global public good whilst protecting individual rights.

Our new policy brief outlines why we need a global governance framework for health data and how Transform Health will help to make this happen.

Transform Health commissioned PATH to undertake a landscape analysis of existing data governance regulations and approaches, and to identify gaps in ongoing efforts to strengthen health data governance.

Four key findings emerged from the landscape analysis that will inform Transform Health’s upcoming work on health data governance:

Greater alignment in approaches to health data governance and data privacy is needed

Transform Health is calling for the development and adoption of a global health data governance framework to help overcome the existing challenges posed by having conflicting and overlapping policies and regulations.

Data governance regulation should be human-centered and inclusive

To meet the needs of everyone, Transform Health will campaign for a health data governance framework to be developed through a participatory, human-centered process that includes diverse groups of end-users.

Foundational principles of health data governance must be defined

Transform Health will facilitate an inclusive process to develop a set of global health data governance principles.

Transform Health is well-positioned to mobilise support for global health data governance framework

Transform Health will use its growing platform to raise awareness among the public and policymakers about the need for stronger governance of health data.

Read the policy brief to find out more!

Transform Health At Global Digital Health Forum: How Will Digital Technology Help Achieve UHC2030?

Digital technologies and data offer unprecedented opportunities to tackle health system challenges, to enhance the quality and coverage of health services, and to empower individuals to better manage their own health. However, without concerted efforts and strong political leadership, the digital transformation of health systems and the accelerated use of digital technologies could increase health inequities and undermine the ‘leave no one behind’ agenda.

Building on a session held at the Global Digital Health Forum (GDHF) in 2019, Transform Health convened a panel of thought-leaders at the 2020 GDHF for a lively discussion on the conditions that need to be in place for digital technology and data to support universal health coverage (UHC) by 2030.

The session was moderated by Richard Dzikunu from Young Experts: Tech 4 Health and featured three panelists, each bringing a unique perspective to the topic:

  • Dykki Settle, Co-Chair of Transform Health and Chief Digital Officer at PATH
  • Jess Morley, Policy Lead, DataLab, University of Oxford
  • Dr Carlos Acosta, Physician and High-Level Advocacy co-chair, Youth Coalition for Sexual and Reproductive rights
Opening the session, Richard Dzikunu tested the pulse of the audience by asking whether they thought that digital technologies and data can help or hinder UHC. Just under half of the audience (42%) said that they can help. The remaining 58% said that it depends.

 

DIGITAL DIMENSIONS OF UHC

 

Dykki Settle opened the session by unpacking the digital dimensions of UHC. He explained how digital technologies can help to expand UHC along the three dimensions of population coverage, service coverage and cost coverage. To give just some examples: data analytics can help policymakers better understand who is not being covered by health services or who is receiving poor quality care; digital technologies can be used to increase the quality of existing services and introduce new capabilities; and digitalisation can improve management of financial resources, and make healthcare more affordable.

 

Noting that in many countries, only a small proportion of the total population is effectively covered by health services, Dykki questioned whether UHC can be achieved by 2030 without digital technologies and capabilities. To realise the potential of digital health, however, countries need to remove digital inequities and close the digital divide. Investments in ICT infrastructure are a necessary foundation for digital health.

 

BARRIERS TO DIGITAL HEALTH BENEFITTING ALL

 

Jess Morley offered a more skeptical perspective on the potential of digital health technologies and data to benefit everyone equally. She outlined three main concerns. Firstly, that digital tools are being used as an excuse to shift responsibility away from the healthcare sector to the individual without ensuring that people have a good understanding of how digital health apps work, for example, and the baselines they are being measured against. She argued that the primary use of digital tools should not be for empowering the person, but rather for enabling the group and getting a better understanding of public health and population health.

Her second concern was that there is insufficient safety testing of digital tools launched directly to consumers. Whilst formal medical products must undergo rigorous testing, the same measures are not required for digital health interventions, particularly those tools that are categorised as supporting wellness.

Finally, Jess raised a concern that digital tools may increase people’s access to health information but the tools alone are insufficient for people. Varying socio-economic circumstances and levels of eHealth literacy affect an individual’s understanding of health information, their ability to distinguish reliable information, and their power to act on it.

 

DATA AND DATA USE NEEDS TO BE MORE REPRESENTATIVE

 

Dr Carlos Acosta echoed concerns raised by Jess about who is designing digital tools for who. He argued that not enough is being done by the digital health community to ensure that no one is left behind. The data that drives digital health technologies is rarely reflective of the full population. For example, there is often little consideration of marginalised and minority groups’ experiences of using a digital tool in the development process, or of the potential repercussions of using it.
Carlos also highlighted that analysis and interpretation of health data – and health-related data – often reinforces social constructs and biases which can result in discriminatory decisions. He gave examples of ways that AI and data collection practices can undermine privacy, expose vulnerable people to harm, and be used to discriminate and even persecute social minorities. Developers of data-driven technologies, he argued, must proactively include social minorities in the design of algorithms and digital tools. Carlos’ urged people to be skeptical about data and to always question the purpose of any data collection exercises and how data will be used.

 

CHANGING DYNAMICS BETWEEN DIGITAL AND HEALTHCARE

 

All panelists agreed that digital technologies and data are tools that can reduce or increase health inequities depending on how they are used. Digital solutions are not necessarily the answer to all health problems, and finding the optimal combination of digital and non-digital approaches is something that requires further exploration by the UHC community.

 

Dykki encouraged the audience not to think about digital health but health in the digital age. He noted that 2020 and the COVID-19 pandemic had created a tremendous shift in the dynamics between digital technologies and healthcare. For the first time, we are seeing a bi-directional relationship between the two: digital continues to drive transformations in health, and the response to health challenges is also accelerating transformations in the digital sphere.

 

STRONGER GOVERNANCE NEEDED

 

The extent to which digital technologies and data can support UHC, the panelists agreed, depends very much on how they are governed. The current policy and governing environment around digital health technologies and data doesn’t enable everyone to benefit equally. Furthermore, regulation and governance of digital health remains reactive rather than proactive because of the speed at which technology is moving.

Challenges to effective governance include clarifying the mandate and responsibilities of governments to govern elements of digital health that fall outside of formal health systems, such as technologies that are deployed under the wellness sector. Another challenge is governing the informational space – or infosphere – which can benefit and harm both physical and mental health.

A key message to policymakers, echoed by all the panelists, was that greater attention must be given to governance of digital health – the guardrails and the enabling environment – that can help us mitigate the risks and maximise the benefits of digital technologies and data for all. Stronger governance frameworks must be developed to ensure that approaches to digital health support UHC.

In closing, Richard stated that we have a long way to go to ensure that digital technologies and data support empowered communities and create equitable access to affordable and high quality healthcare for everyone. He encouraged everyone to embrace digital health technologies and data and to work together to establish stronger and inclusive mechanisms for accountability and oversight. UHC is achievable by 2030 but only if we all collaborate to ensure no one is left behind.

Digital Technologies and Data Use: Making Them Work for Young People

n December 2020, Transform Health organised two sessions at the Global Digital Health Forum. The first session discussed how digital technology and data can help the world achieve UHC by 2030. The second was a youth-led session focused on addressing the lack of meaningful engagement of young people in the development, application and governance of digital health technologies and data.

The session was moderated by Evalin Karijo, Director of Youth Advocacy at AMREF and featured three young experts:

  • Marwa Azelmat, Young Experts: Tech 4 Health
  • Babusi Nyoni, Co-founder, Sila Health
  • Brian Wong, Surveillance Epidemiologist and Youth Officer for the Lancet and Financial Times Commission on Governing Health Futures 2030

YOUNG PEOPLE ARE OVERLOOKED IN THE GOVERNANCE OF DIGITAL HEALTH AND DATA

Introducing the session, Evalin noted that despite improvements in young people’s health over recent decades, access to quality health care and the achievement of UHC is still unrealised for many of the 1.2 billion young people on the planet, particularly for the poorest and most marginalised in low and middle-income countries.

Young people are major consumers and creators of digital technology and are optimistic about the opportunities that technology and data present for their health and wellbeing. However, to date, young people’s needs and perspectives have been largely overlooked in the digital transformation of health services and systems. Current governance mechanisms for digital health do not prioritise the needs of young people or give sufficient weight to their views and experiences.

Marwa Azelmat said that policymakers need to understand that young people are not a homogenous group. The traditional way of thinking about young people as simply an age bracket means that their diverse needs and experiences are often overlooked in the collection, use and governance of health data. Overall, she said, representative and disaggregated health data on young people is scarce and health data is not being fully used as a public good for the benefits of young people. Working with young people as stakeholders rather than just beneficiaries, Marwa argued, will help to overcome the trust deficit that currently exists between young people and those in positions of power.

Marwa highlighted the work of Young Experts: Tech 4 Health which is part of a movement to increase youth leadership in the realms of digital health and health data. She noted that the COVID-19 pandemic has demonstrated the considerable experience and skills that young people have when it comes to digital technology. Young people, she said, have been on the front lines in using and creating innovative technologies to serve the health of young people in their communities. This comment provided the perfect segue for Babusi Nyoni to talk about his work

Sila Health, a youth-led Zimbabwean start-up, was created in early 2019 to get Africa’s young population talking about their health. Babusi explained that millions of young Africans struggle with accessing basic health and medical care and that whilst internet penetration is low on the continent, it is growing at a fast pace. Platforms such as Sila Health present an incredible opportunity to reach Africa’s young, digitally connected and savvy audience. AI chatbots give young people in low- and middle-income countries answers to medical queries on freely available chat platforms in 14 local languages and whenever needed the chatbot connects users to healthcare providers for remote consultations. Anonymised data generated by Sila Health is being used by municipalities across Africa to track the real-time prevalence of symptoms leading to disease outbreaks such as cholera, malaria, and more recently COVID-19.

Babusi shared some of the challenges in his innovation journey. Heavy government bureaucracy, for example, can stifle the speed at which digital health interventions can be rolled out. He also noted frustrations in dealing with policymakers who may be many steps behind young innovators in terms of their knowledge about the potential of digital technologies to improve health outcomes and reduce costs.

Brian Wong raised concerns about the often tokenistic ways that young people have historically been engaged by those in power. What constitutes ‘meaningful’ engagement, he argued, is entirely subjective. When designing and implementing initiatives particularly for young people, it’s important to ask who they’re truly meant for and what medium or form of engagement will most effectively allow young people to not just benefit from the opportunities presented by the digital transformations in health, but also to drive these changes themselves.

Brian proposed that policymakers should do more to tap into young people’s creativity when shaping digital health systems. Young people should be actively and intentionally involved in every step of digital health processes as co-creators, collaborators, problem solvers and change agents. Policymakers should ask young people what their priority health needs are and what kinds of digital health systems would support them best. This requires not only creating new spaces where young people can contribute their voices but going to spaces that young people already occupy.

HOW CAN YOUNG PEOPLE ACCELERATE THE ADOPTION OF DIGITAL HEALTH?

Babusi argued that young people, given their proximity to technology and openness to adopting new solutions, are accelerants for a wider shift in attitudes and behaviours related to digital health technologies. Young people should therefore be given the space and resources to innovate and to generate evidence of what works. Marwa agreed that when all the conditions are in place for young people to thrive, they can step up their innovation game.

To play their leadership role effectively, Brian noted, young people need to understand the underlying processes governing health and digital technologies. Greater investments need to be made in developing young people’s digital health and civic literacy and skills so that they can safely and confidently navigate the digital environment and help shape the way it is governed.

All the panellists emphasised that the countries with the most youthful populations in the world face a double disadvantage of weak health systems and low access to digital technologies. Marwa added that not all young people have the luxury of being ‘digital natives’. Concerted efforts need to be taken by governments to close the digital divide – between and within countries – so that all young people can participate in and benefit from the digital transformations in health.

MESSAGES TO MINISTERS OF HEALTH

Evalin asked the panellists what they would request their Minister of Health to do to enable young people to have more control over digital health technologies and health data:

Marwa’s first message to Ministers was that they should do more to put principles of equity and health as a human right into practice in digital health and development at large. Secondly, she called for more to be done to tackle the digital divide and disinformation which are both barriers to young people flourishing in a digital world.

Babusi urged Ministers to be open to innovative ways of transforming healthcare and to explore the value of more patient-first and patient-led health approaches.

Brian wanted to remind Ministers that while the potential of digital health technologies is enormous, it’s not going to come to fruition without ensuring that the next generation can use it effectively and responsibly. He, therefore, urged Ministers across sectors to invest in capacity-building opportunities for youth.

MAKING DIGITAL HEALTH WORK FOR YOUNG PEOPLE BEGINS WITH US

A poll ran at the start of the session showed that the audience was in strong agreement with the messages of the panel: young people’s needs and perspectives should be at the heart of digital health and data governance and young people should be involved in creating governance mechanisms.

Evalin concluded the session by emphasising that responsibility for making digital health work for young people begins with young people themselves. She urged more young people to join the fantastic panellists in advocating for greater action and accountability from policymakers and to call for greater investment in young people and youth-led organisations. Those interested in getting more involved in campaigning for digital health and data that works for young people were encouraged to get involved with initiatives like Transform Health and Young Experts: Tech 4 Health.

Young People Demand Greater Investments In Themselves: Transform Health At AHAIC 2021

While organisations across the globe, particularly in the global health and development sectors, are waking up to calls for a more meaningful engagement of young people, young people across Africa report feeling consistently excluded from decision-making processes that affect their health and their lives. This exclusion takes place on several fronts – from not having the access required to engage with policy making processes in the first place, to engagement efforts appearing hollow and tokenistic. Listening to young people makes it clear that decision makers need to interrogate whether their commitment towards youth engagement is genuine or merely a compliance exercise.

The plenary session also showed this video that featured the voices of young people across Africa from beyond the panel discussion. In three minutes, five young people state powerfully why youth engagement must be meaningful and non-negotiable.
“We must invest in young people and youth-led organisations beyond one-off conferences,” said Dr Natasha Salifyanji Kaoma, the CEO of Copper Rose Zambia, a youth-led organisation that works with young people in Zambia on their sexual and reproductive health and rights (SRHR). “Too many organisations will fly young people around the world, but not invest in their skills and their work.”  

 

This lack of investment in the capacity building of young people was criticized by several young people, whose voices took centre stage at the plenary session on Youth Leadership in Global Health at the Africa Health Agenda International Conference 2021 (AHAIC 2021), held on 10th March by Transform Health, Fondation Botnar and Y-ACT. Along with Dr. Kaoma, three other young leaders shared the stage with Richard Dzikunu, the facilitator, representing the Young Experts: Tech 4 Health group.

 

Dr. Shakira Choonara, the Youth Ambassador for the African Union, also called out empty tokenistic practices that are pushed forth under the guise of meaningful youth engagement – “Why are you inviting young people? If it’s just for a conference, it’s a checkbox exercise – to the extent that they even script what you’re going to say, how you’re going to say it, what question you will be asked. That’s not inclusion.” She underscored the need for long-term and sustained investment into building the capacity of young people. “If you are a global health organisation thinking about how to build a cohort of young people, consider investing for 5-10 years to professionalise youth and build their capacities.” She cited the example of how interns at the WHO have only just begun to be provided with living expenses. Richard Dzikunu, the session facilitator, echoed this sentiment. “Young people are engaged in public-facing activities by organisations, but their capacity is not built such that they can sustain themselves professionally.”

 

The perception that young people are not deserving of a place at the table, that their time will come, is at odds with the reality on the continent. While it is true that young pèople are the future of African, leaders can no longer ignore the fact that the majority of the continent’s population is under 25. Young people are here now, shaping the digital transformation of health systems and opening new opportunities for progressing towards universal health coverage by 2030.

Watch the full video recording here.
“There is no government in the world that is comfortable and eager to have young people participate. It is not comfortable or convenient. If we wait to be engaged and for them to invest in us, it will be tokenistic.” Hon. Johnson Sakaja, the dynamic young Senator of the Nairobi City County, made powerful statements about young people being a “force to be reckoned with”. He insisted that the way to meaningful youth engagement lay in young people organising, getting out on the streets, and ensuring that more young people were elected into positions of power. “If you’re better organized, then you become better recognized. They will no longer be able to ignore you.” 

 

Tito Ovia, the co-founder of digital health start-up Helium Health whose health tech solutions are being used by over 5,000 doctors across West Africa, agreed with Senator Sakaja’s sentiment. She too believed that progress lay in young people seizing opportunities and letting their work speak for themselves. On speaking of her journey of transforming and digitizing healthcare in West Africa, she said that it soon became imperative that they had to engage with the public sector and governments in order to truly make a meaningful difference. “The only reason we were able to scale and grow, was the quality of our work and the personal touch we provided. We as young co-founders, were dedicated to every aspect of our business. Nobody can now doubt our capacity as a company. Let your work speak for itself and do your research to make sure you know what you’re asking for.”

 

The emphasis on young people investing in their own capacities was stressed by most of the speakers. Dr. Kaoma said, “We need to be knowledgeable. When we get to that meeting, we need to contribute and hold our ground.” Similarly, Dr. Choonara encouraged young people to demand better of organisers, and not feel pressured into agreeing to terms they are not happy with. “Ask yourself, why are they inviting me? You have the right to say no if it doesn’t align with your passions. Follow up with post-conference activities to reiterate your commitment to the plan of action.” Youth responsibility is an equally important part of meaningful youth engagement.

 

This kind of investment in personal skill building and capacity strengthening is shaped, in a large way, through the existence of peer networks and mentorship among young people. Across the continent, young people are already driving innovations in digital health. We require more opportunities to allow the next generation of entrepreneurs to develop digital health solutions that respond to the needs of young people.  “I have achieved a lot more in my short career as a global youth activist than many others, and that has been because of mentorship from other young leaders.” said Dr. Kaoma. Richard Dzikunu, resonated with this sentiment. “We are all a product of investment by various organisations.”

 

However, we must remember that young people are not a monolith. It is often young people with the most access to economic and social power structures that find seats at the table, while the voices and needs of marginalized youth are not considered at decision making spaces. The knowledge and experiences of diverse African youth must be leveraged if we are going to accelerate progress towards UHC in a digital, post-COVID world. This means supporting more young people from underrepresented groups to develop their leadership skills.

 

At a very fundamental level, youth need access to these spaces and opportunities to build peer networks and find mentors. We need investments in digital infrastructure, electricity and subsidized mobile data to improve digital penetration to ensure it is not only young people with access that are on the receiving ends of opportunities. Similarly, leaders need to invest in building supportive and youth-friendly work cultures and in the professionalization of young people.

 

In order to satisfy the healthcare needs and right to participation of the continent’s growing young population, African governments, working with the private sector, international organisations and civil society need to harness digital technology and data. The equitable and responsible use of digital technologies can transform health systems and create new ways for young people from different backgrounds to be part of decision-making processes. Greater commitment and investments in young people’s engagement, capacity building and advocacy are essential to harness the potential of more African youth to drive equitable progress towards development goals.