My Data Our Health: A global campaign on our personal health data

Launching a public conversation on data privacy and personal responsibility for collective well being.

  • On Data Privacy Day, Transform Health and partners launch a global campaign on health data and our rights called My Data Our Health.
  • Effective sharing of health data offers tremendous potential to strengthen health systems and improve medical outcomes. Yet most people are unaware of how this data is collected, stored and used. There is currently no globally agreed regulation guiding countries on health data to protect individuals and foster trust in health data sharing.
  • Through the My Data Our Health campaign, Transform Health is encouraging people to seek out their electronic health records and to find out more about the information they have access to.

To mark Data Privacy Day, on 28 January, Transform Health is launching the My Data Our Health campaign, and inviting people and organisations to join us and to take part in the public conversation on the following questions:

  • Who determines how our health data is collected, managed, stored and disposed of? 
  • What are the limits of this authority? 
  • How can we ensure this data is being used for public benefit purposes? 
  • How much access and control do and should individuals have over their health data? 
  • How can we ensure this ownership and control is respected and protected?

“Currently we have a system of health data extractivism where individuals hand over their data and then lose control over this most intimate information,” said Mathilde Forslund, Executive Director of Transform Health. “We need stronger regulation underpinned by ethical and human rights principles, that enshrine in law the rights and responsibilities of individuals in relation to their health data. My Data Our Health hopes to contribute to that outcome.”

According to some estimates 30% of all data produced is generated by the healthcare industry. Yet most people are still unaware of how this data is collected, who is collecting it, where it is being stored, what it is being used for, and why. As individuals our rights to own and control our health data and our responsibilities to make this available to health planners and researchers, are not clearly defined or implemented in most countries.

“At the heart of the My Data Our Health campaign is the issue of trust in those collecting and using our health data, and ensuring it is used to keep us healthy – now and in the future.” said Allan Ragi, Executive Director of the Kenya Aids NGOs Consortium (KANCO), a campaign partner. “Effective health data governance is necessary to create trust between individuals and institutions and between institutions – for example, to facilitate the sharing of data between healthcare organisations.”  

Through the My Data Our Health campaign Transform Health aims to engage people and politicians in the discussion on how health data is collected, managed, used and disposed of. The campaign, through the ‘Where’s My Data?’ campaign action, is inviting people to go to their local health centre and request access to their electronic health records and digital health information. By highlighting individuals’ lived experiences, the campaign aims to put people in the driving seat when it comes to access and control of their data, and build health systems that are more responsive to their needs. 

VIEW CAMPAIGN WEBPAGE

From #EB152 onto #WHA76: Governments must seize the opportunity to strengthen the governance of health data

The 152nd session of the WHO Executive Board meeting (#EB152) drew to a close this week, following a busy week of official proceedings, bilateral meetings and strengthening collaborations with global health partners. Transform Health is encouraged by the growing support for stronger health data governance and looks forward to building on this momentum as we look towards the 76th World Health Assembly (#WHA76) in May. 

As Member States met in Geneva for #EB152, Transform Health was calling for action on health data governance, including to ensure this is prioritised on the agenda of #WHA76 and to support a resolution, which would initiate the development of a global framework. 

Growing support for health data governance at #EB152

#EB152 saw increasing recognition from both governments and other stakeholders on the need to strengthen health data governance. We applaud the leadership of the government of the Maldives calling for sustainable mechanisms for health data governance during their intervention.  We are also encouraged by the numerous discussions we had with other Member States on the importance of taking action on this issue. During the session on UHC, many governments spoke to the importance of data in achieving UHC (e.g. Botswana, the Republic of Korea, to name a few) and the government of India highlighted the critical role of innovation and technology in primary health care systems – both of which require urgent action on health data governance. 

A growing constituency of non-state actors are also joining the movement for stronger health data governance. This pressing issue permeated across statements from non-state actors during official #EB152 proceedings, including our coalition statement, delivered by PATH, and other constituency statements delivered by the World Health Professions Alliance and by Global Health Council (on behalf of larger constituency groups). This builds on the call to action from more than 150 organisations (and growing) that are demanding urgent action from WHO and its Member States for a global health data governance framework.

Looking ahead towards WHA76

While health data governance was not included as a standalone item in the World Health Assembly (WHA) agenda approved by the Executive Board, this important issue has a clear place as part of other WHA discussions, such as on UHC. Data is an essential tool to strengthen health systems, respond to health emergencies, and advance Universal Health Coverage. Action to strengthen the governance of health data must therefore be prioritised as part of the UHC agenda.

As we look towards the 76th World Health Assembly in May 2023, Transform Health calls on Member States to:

  1. Prioritise health data governance and the need for a global framework as part of UHC discussions during #WHA76.
  2. Ensure that these discussions lead to clear action and a request for WHO to facilitate the process of developing a global health data governance framework, working together with Member States (for endorsement at the 77th WHA in May 2024).
  3. Request WHO to convene a technical briefing on Health data governance during #WHA76, to kick off a discussion on a global framework.
  4. Co-host a Member State-sponsored side event on health data governance at #WHA76 in May.
  5. Engage in the WHO-led event on health data governance being planned ahead of #WHA76. 

To fully harness its potential of data to improve health outcomes, while protecting from data misuse, it is vital that governments come together to strengthen the rules that govern data collection and use. A global regulatory framework, endorsed by governments through a World Health Assembly Resolution, would do just that by establishing a set of minimum standards which would inform national legislation, while also governing health data sharing across countries. This is vital to improve public trust in health data systems, foster data use for public good, improve health emergency response and further global health goals. 

Action on this pressing issue cannot wait. We must seize this opportunity to unlock the strength of data to deliver health for all at the upcoming World Health Assembly and across key discussions in the year ahead.

Power button on as 2023 kicks off!

Harnessing technology and use of data towards achievement of Universal Health Coverage by 2030 remains top on our agenda as Transform Health Kenya Coalition.

It been an exciting quarter and this January we have set the pace for the rest of the year! Here’s an update on what we have been up to and what to expect in 2023.

Human Centred Legislative Guide

With our eye on achieving Universal Health Coverage, the coalition is currently working on a human centered legislative guide aimed at contributing to the legal and policy environment for E-Health in Kenya as an enabler towards achievement of the universal health coverage commitments. The Guide, that will act as an important tool to both policy and law makers as well as communities, speaks to recommendations on implementation of Section 104 of the Health Act (one-legislation), and has been developed through a consultative process involving major health sector stakeholders. Look out for the final report and guide in the coming months.

#MyDataOurHealth Campaign

Data protection is key to a human-rights based approach to health data management and use. On #DataProtectionDay, Transform Health Kenya was not left behind in the #MyDataOurHealh Campaign and called on the Ministry of Health to protect our privacy.

Calling for #HealthDataGovernance to be included in the WHO Executive Board Meeting

Transform Health Kenya joined in a global campaign calling on the Ministry of Health, Kenya, to make a formal request to support a resolution to have health data governance on the agenda at the WHO Executive Board meeting and the World Health Assembly. The coalition also called upon the Kenya to sponsor a World Health Assembly resolution mandating the WHO to lead a fully inclusive process to develop a global framework.

Why Transform Health Kenya supports legislation on digital health

Did you know that the Ministry of Health in Kenya is in the process of developing an E-Health Bill? Well, while Transform Health Kenya supports the development of such bills that create an enabling legal environment for the adoption of digital health, there are some significant gaps to be addressed. Check out this statement on Why Transform Health Kenya supports legislation of digital health.

Transform Health Kenya Quarterly Meeting

On 26th and 27th January 2023 the coalition held the second quarterly meeting that presented an opportunity to plan for a wholesome delivery of its annual interventions.

Figure 1: Transform Health Kenya Coalition Members Quarter 2 Meeting Held on 26th and 27th January 2023

What to expect from Transform Health Kenya in 2023

  1. The implementing partners will engage in the development of 3 key research reports on the need for people centred standardization of Digital Health Technologies, Digital Health Services and Applications and Resource Gap Analysis affecting the implementation of digital health in Kenya.
  2. The members will also engage the national and County governments on the development and enactment of a national E-Health Bill as well as county specific E-Health Bills.
  3.  Coalition members also intend to enhance the capacity of community members with a special focus on women, youth, and key populations on the key features of existing legislation and legislation currently being developed by the government, focusing on digital health technologies and data.
  4. Digital health dialogues with government, healthcare professionals, media, and the private sector to promote government stewardship of digital health programs
  5. Media campaigns to raise awareness on digital health technologies as an avenue for the realization of Universal health coverage.

We have a national Twitter Page, and you are welcome to visit, follow and engage with us! @Trans4mHealthKe

Why Transform Health Kenya Coalition supports the development and enactment of a digital health law in Kenya

The Kenyan Ministry of Health is in the process of developing e-health legislation and has since 2021 been engaging stakeholders in the development process of an e-Health Bill. The Transform Health Kenya Coalition has been monitoring and participating in the process with the most recent workshop convened by the Ministry of Health held from 21st to 25th November 2022 in Naivasha.

The e-health legislation is being developed in compliance with section 104 of the Health Act, 2017. This Act mandates the Cabinet Secretary Ministry of Health to within three years[1] ensure the enactment of an e-health legislation that provides for among other things (a) administration of health information banks including interoperability framework, data interchange and security; (b) collection and use of personal health information; (c)management of disclosure of personal health information; (d) protection of privacy; (e) business continuity, emergency and disaster preparedness; (f) health service delivery through M-health, E-learning and telemedicine; (g) E-waste disposal; and (h) health tourism.

E-Health is recognized as a mode of health service provision in Kenya [2] and defined in the Health Act, 2017 to mean the combined use of electronic communication and information technology in the health sector including telemedicine.[3] Kenya is legally behind schedule in this process given that as per the Health Act, the legislation ought to have been enacted by 2020.

Digital health technologies are a promising phenomenon in quality healthcare service delivery. The quest to continuously innovate ways in which one can receive quality healthcare from the comfort of one’s home is a motivating factor for digital health stakeholders. There has been an upsurge of innovation in the health sector lately, precipitated by the increased use of mobile phones and devices. The network coverage is also broadly distributed allowing easy communication and sourcing of health information.

According to the World Health Organization, digital technologies have the potential to support health systems in health promotion and disease prevention, and by improving the accessibility, quality and affordability of health services.[4] WHO’s Global Strategy on Digital Health 2020-2025 acknowledges that there is a growing consensus in the global health community that the strategic and innovative use of digital and cutting-edge information and communications technologies is an essential enabling factor towards ensuring that one billion more people benefit from universal health coverage, that one billion more people are better protected from health emergencies, and that one billion more people enjoy better health and well-being.[5]

Despite the new digital tools and products entering the Kenyan market all the time, the regulatory systems have not kept up with this influx of technologies. A landscape analysis of digital health and universal health coverage in Kenya conducted by Transform Health Kenya Coalition established that Kenya lacks a comprehensive legal framework conducive for the adoption and utilisation of digital health technologies. The country still relies on diverse standards, laws and policies which apply to eHealth but do not specifically discuss it, thus creating gaps in the regulatory and enforcement system.[6] While there are several policies and guidelines available on e-health, electronic medical records, and health information systems, they are often at a relatively general level. The absence of clear, enforceable regulations and laws creates a gap that the government and legislators need to address with the full participation of civil society and other sectors.

The government has also been making commitments to prioritize and implement digital health programmes. For instance, H.E. President Dr. William Ruto, through his campaign manifesto, promised that the Kenya Kwanza government would integrate Information Communication and Technology systems to enhance telemedicine and health management information systems. The President also pledged to immediately operationalize a National Health Information System for Electronic Health Records (EHR) to standardize and ensure the portability of patient data. Relatedly, under the Third Medium Term Plan the government had also prioritised digital health programmes as one of the flagship projects to expedite the development of the healthcare industry. The government outlined plans to digitise services and adopt technologies such as e-health, m-health, telemedicine, and space technologies by leveraging on the improved ICT infrastructure and mobile penetration rates (stated to stand at over 80 per cent).[7]

It therefore goes without saying that an enabling legislative framework is critical to support these priorities.

Through a digital health law, the country will set an appropriate legal framework for assuring client safety, data security, appropriate use and ownership of health data, privacy; place people at the centre of digital health through the appropriate health data ownership; strengthen governance of digital health by leveraging existing structures and creating sustainable and robust governance structures, including regulatory frameworks; establish standards for safety, security, privacy, interoperability, and the ethical use of data within and outside the health sector and strengthen gender equality and health equity approaches.

These can be realised through the E-Health Bill 2021. Transform Health Kenya Coalition will publish a comprehensive position statement on the proposed provisions in the Bill to inform public discourse. The current draft of the Bill has the following objectives:

  • establish a national e-health system which encompasses public and private institutions and providers of health services at the national and county levels and facilitate in a progressive and equitable manner, the highest attainable standard of health services.
  • protect, respect, promote and fulfil the health rights of all persons in Kenya to the progressive realisation of their right to the highest attainable standard of health, including reproductive health care and the right to emergency medical treatment.
  • promote the mobilization and efficient use of resources needed to improve health information.
  • improve collection, collation, analysis, storage, dissemination, and use of data.
  • create the necessary regulatory framework for information management and reporting in the health sector.
  • enhance the application and use of information communication technology (ICT) to enhance access and quality of health care.
  • improve privacy, confidentiality, and security of information sharing and use.
  • provide a framework for implementation, monitoring and evaluation, and financing of the HIS policy objectives.
  • create an environment for continual improvement of a devolved HIS in line with the new constitutional mandate; and
  • provide an overarching institutional framework that defines roles and responsibilities.

Through the Bill, the country has an opportunity to provide substantive legal provisions on establishment and maintenance of a comprehensive integrated health information system; health data governance; management of disclosure of personal health information; health service delivery through M-health, E-Learning and Telemedicine; E-Waste disposal and health tourism.

Transform Health Kenya Coalition voices its support to the development of this important piece of legislation.

  • The Coalition calls upon the Cabinet Secretary Ministry of Health, in compliance with Section 104 of the Health Act 2017, to expedite the development of this legislation.
  • Importantly, the Coalition urges the Ministry of Health, where the draft Bill is currently domiciled, to initiate public consultations on the draft Bill to ensure that the process is as inclusive as possible where views, opinions and recommendations from all stakeholders are considered.
  •  The Coalition further calls on the Ministry of Health to facilitate the participation of young people, women and key and vulnerable populations in this legislative process to ensure their perspectives, concerns and needs are adequately addressed so they can both benefit from the digital transformation, and access and control their own data to improve their health outcomes.
  • The Coalition is keen to see the Bill introduced in Parliament, and calls upon legislators, once introduced, to safeguard the interests of all Kenyans in enacting this law.

Endorsed by:

  1. Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN)
  2. Nelson Mandela TB HIV Information CBO
  3. KP Consortium
  4. Viamo Kenya
  5. Imara.Tv
  6. Africa Media Trust (Love Matters Kenya)
  7. Picture Youth Group Organisation.
  8. Men For Positive Living Support CBO
  9. White Ribbon Alliance Kenya

[1] Three years of operation of the Health Act, 2017

[2] Section 103, Health Act, 2017

[3] Section 2, Health Act 2017

[4] https://apps.who.int/gb/ebwha/pdf_files/WHA71/A71_R7-en.pdf

[5] WHO (2021) Global strategy on digital health 2020-2025 available at https://cdn.who.int/media/docs/default-source/documents/gs4dhdaa2a9f352b0445bafbc79ca799dce4d.pdf?sfvrsn=f112ede5_75

[6] Report of Technical Working Group to Develop Guidelines and Checklists for Report on the Regulation of Electronic Health Practice in the Country, 2019,  https://kmpdc.go.ke/resources/4.%20Draft%200%20%20Electronic%20Health%20Regulation.pdf

[7] Third Medium Term Plan 2018 – 2022.

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.

Investing In Digital Health: New Report & Key Recommendations By Transform Health

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.

To make the case for this vital requisite investment, we have launched a new report titled ‘Closing the digital divide: More and better funding for the digital transformation of health: A Conceptual Framework to guide investments and action towards health for all in the digital age.’It provides an evidence-based approach to prioritise investment areas and define the level of investment necessary to support the financing of digital health transformation.

Download the report
Download executive summary

“We have reached a stage in global digital health where we are collectively thinking beyond the introduction of individual digital solutions, instead focusing on guidance and investments in the architecture and the enabling environment for digital transformation of health systems,” says Prof. Alain Labrique, Director, Dept of Digital Health & Innovation, World Health Organization, who writes the Foreword to the report.

This report has been developed by Transform Health, with the support of its partners PATH and Joep Lange Institute, and with research contributions from regional networks and the Young Experts: Tech 4 Health. It was guided by Transform Health’s Resource and Investment Circle and a dedicated global group called the Global Research Consortium that was established to contribute to the development of the conceptual framework.The Global Research Consortium brought together regional and global partners and young people from around the world.

Recommendations:

The report lays out six key recommendations for national governments, corporates, and international donors to increase and improve investments towards building digitally-enabled health systems that improve health outcomes for all.

It calls for:

  • More investment from domestic and international sources
  • Better coordinated investments, aligned with national priorities
  • Costed national digital health strategies and investment road maps to guide transformation
  • Robust regulatory frameworks and policy environments in countries
  • Mechanisms for meaningful multistakeholder engagement in the digital transformation process, including civil society and marginalised communities
  • Improved digital connectivity, including coverage gaps, affordability and digital literacy

Infographic

View current global challenges in the funding landscape and the six key recommendations of the report in this infographic.

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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.

Key within these priority areas is investment in greater digital connectivity. Christoph Benn, President of Transform Health says, “A large part of the total projected investment – about three-quarters of it – is for digital connectivity infrastructure within the health sector. This is a critical investment area to ensure that every health worker, health facility and household is connected. If ignored, the divide in connectivity will widen the health equity gap and further marginalise disadvantaged populations.”

As countries across the globe demonstrate that digital health can lead to improved health outcomes, the digital transformation of health systems could hold the key to achieving Universal Health Coverage by 2030. Increased and coordinated investments that are aligned to national priorities are a critical component on the path towards an equitable, inclusive and sustainable digital transformation.

Mathilde Forslund, Executive Director of Transform Health, concludes, “The report is a milestone for Transform Health, as it will underpin the coalition’s advocacy efforts with governments and international funders in the coming years to call for increased and coordinated domestic and international financial investments towards digital health transformation.”

Meet RECAINSA – Driving digital transformation in Latin America

Transform Health partners with regional networks in various parts of the world to influence regional agendas, and drive the digital transformation of health at a regional level. The Central American Health Informatics Network (RECAINSA) is our partner network in Latin America. They have been instrumental in advancing our objective of a global health data governance framework by convening multistakeholder roundtables in Latin America and gathering perspectives on how this issue relates to the region.Below, find a short interview with RECAINSA’s General Manager, Joseline Carias, on their work in advocating for a health data governance framework in Latin America.

 

How does RECAINSA further the digital transformation of health? Tell us more about the organisation.

RECAINSA is a non-profit organisation, which began its work as a volunteer organisation, precisely with the intention of promoting digital health as a strategy for countries – first in Central America and then in Latin America and the Caribbean – as a way to improve the population’s access to health services, improve the quality of health care services and contribute decisively to achieve universal health coverage, which is a common goal in all countries of the world.

 

RECAINSA as an organisation has these principles, the vision of being a stakeholder that can contribute being that connector between the stakeholders and that through these connections governance can be strengthened, generating the necessary spaces to discuss, plan and drive forward the digital transformation that is a process in the short, medium and especially long term. There are issues that in some countries depending on the level of maturity are already quite solved and many others that have not been able to solve the most basic issues.

 

RECAINSA recently organised the first multi-stakeholder regional roundtable on the Health Data Governance Principles What role do you see the Principles playing in Latin America?

This initiative developed by Transform Health is fundamental given the moment we are living in. I believe that since the pandemic, we have seen digital acceleration of the whole society, but especially of the health sector, as a consequence of mobility restrictions and the emergence of strategies such as telemedicine and teleconsultation as a viable way to bring and maintain continuity of care for patients. But this has also brought some significant challenges in terms of data governance, such as – Who owns the data? How do you ensure the security of patient data? How do you ensure the appropriate use of data by governments? I believe that the Principles address in a holistic way the need to have a solid data governance structure to cover the aspects mentioned above that have to do with equity, security and use of data to the extent of responsibility of each actor involved.

 

Objectives & structure of workshop

The main objective of this first roundtable was to present the Health Data Governance Principles, developed by Transform Health, which were launched on April 7, 2022, and whose aim was to strengthen health data governance approaches at both national and regional levels. In this sense, the round table focused on:

 

  • Presenting the Health Data Governance Principles and establishing the need for a global framework to strengthen health data governance in the Latin American and Caribbean Region.
  • Obtaining the support of governments, regional authorities, cooperation agencies, academia and civil society in the Latin American and Caribbean region for this agenda, highlighting actions that can be taken, with emphasis on the opportunities offered by the 75th World Health Assembly.
  • Relevance of the Principles in Latin America
Despite the existence of some data governance regulation in several countries, there are currently no comprehensive, globally and regionally agreed upon principles for health data, nor is there a regional guiding framework to guide and inform countries in constructing their own health data governance legislation and regulation. RECAINSA is working with Transform Health to help fill this gap by leading the development, promotion and endorsement of the Principles in the LAC region, which are aimed at supporting quality, efficient and sustainable public health systems towards Universal Health Coverage. Undoubtedly, these principles are an important step towards the development of a global framework for health data governance that supports the use of digital technologies and data for the public good.

 

Which of the Health Data Governance Principles or clusters drew the most focus at the roundtable and why?

I believe that all the Principles received the necessary level of consideration. The eight Health Data Governance Principles are interconnected, but undoubtedly the most focussed cluster of Principles in our region were “Protect People” and “Prioritise Equity”. One of the points discussed was linguistic diversity. In the region, there are several countries with multilingual populations, for example in Guatemala, there are 25 different languages spoken, this makes it difficult to obtain and use data. The aim should be to reach more people but also with language accessibility. It is important to use data in favour of vulnerable population groups, such as children, women, the elderly and other population groups. Data should be from them and for them. Mitigate data bias, because in Latin America there are different levels of maturity in the use of technologies in the countries, so it is important to promote it.

 

What were some of the key takeaways from the discussion?

RECAINSA aimed at directing the discussion towards developing a culture of data. RECAINSA used the Principles as a mechanism, because of their universal nature regarding the guarantees of protection of individuals and communities, of achieving access to health and of ensuring that such access is equitable for all.

 

What are some of the main challenges and opportunities for health data governance in the region?

The countries of the region are at different points in the process of digital transformation in healthcare, and therefore in health data governance. For example, Argentina and Chile are advanced, while Ecuador is lagging behind, but countries like Honduras and Nicaragua are in an embryonic stage. The regulatory issue is what is preventing many countries from making progress. Not having the necessary regulations to advance in the digital transformation of healthcare services is a barrier. It is necessary to promote national leadership to promote a digital transformation agenda. To this end, it is necessary to promote alliances between the public, private and civil society sectors. It is also necessary that this agenda has all the necessary infrastructure resources.

 

How is RECAINSA paving the way for stronger health data governance in the region?

As I mentioned before, RECAINSA is a connector that has become an interesting and important platform where different actors and sectors of our region converge. We have been working with the private sector for some years and with academia more recently, in the very short term we have started to work with governments. In addition, we maintain close collaboration with regional and subregional organisations, which allows us, as I mentioned, to have that platform where we can open the discussion, exchange ideas, share experiences and the best possible practices, first based on the principle of “not reinventing the wheel” and that the experiences that have been successful for some can be successful for others, but also the lessons learned. I believe that this process of digital transformation is not always a bed of roses, there are also many stumbles, and what better to learn from the stumbles of others to avoid going through the same thing again, and in this obviously the issue of data governance has been a priority given the context in which we are living, given the vulnerabilities we have seen in the region in terms of information security in general and that leads us precisely, as a platform, to develop some initiatives to accompany the process of change management in the countries of the region as these changes take time and always represent challenges.

 

Joseline Carías Galeano is a project consultant on topics related to digital transformation, she is a digital health promoter and networking activist at a global level. She is member of the Board of Directors and the General Manager at RECAINSA, an organisation formed by Latin American volunteers and professionals with the intention of supporting national and regional digital health strategies. Joseline was a key player in the development of the Health Data Governance Principles in the LAC region as part of the Data Policy Circle and promoter of its endorsement and implementation globally from her leadership role played from RECAINSA and Transform Health.

Making The Case For Stronger Health Data Governance

As the World Health Organization brings together experts for a Health Data Governance summit (June 30th), and as health leaders consider the inclusion of digital technology at the World Health Assembly and at the G7, governance of digital technologies, data and artificial intelligence(AI) has never before seen the level of priority and attention, particularly in the wake of COVID-19.

Transform Health takes the opportunity to continue reflecting on this critical issue by making the case for stronger
global health data governance to close the digital divide and invest in digitally-enabled health systems, particularly for the most vulnerable such as women, children and adolescents. This is core to what Transform Health has set out to do since 2018 when founding partners decided to come together to advocate and campaign for a global health data governance framework that allows for meaningful and trustworthy use of health data, while safeguarding data privacy, ownership and security.

Why do we need digital transformation of health systems now?

At the United Nations General Assembly in 2019, Heads of State adopted the UN Political Declaration on Universal Health Coverage (UHC). The Declaration — which is founded upon Sustainable Development Goal , the Constitution of the World Health Organization and the right to health — reiterates WHO’s UHC target of expanding access to essential health services to at least three billion additional people by 2030. However, governments are off-track to meet their UHC commitments. On current trends, up to five billion people worldwide will still not have access to essential health services by 2030.

Attaining UHC today requires urgent, equitable and inclusive digital transformation of health systems in lower and middle-income countries. Digital transformation of health systems includes scaling up the use of existing technological tools such as electronic medical records and health management information systems, but also innovation such as novel telemedicine approaches and digital epidemiology.

Such digital technologies depend fundamentally on data: personal and non-personal, health and non-health. Rights-based, reliable and representative health data management is crucial to digital transformation. When utilised responsibly, digital health technologies and high-quality data can accelerate health equity by making health systems stronger, more effective, and more responsive to the needs of the populations they serve.

Why do we need effective health data governance?

Strengthening the governance of health data necessitates specific and urgent attention by policymakers to protect people from the nefarious or discriminatory use of personal and sensitive information. Effective governance of health data is required to maximise the enormous public health benefits that this data can generate whilst protecting the rights of individuals.

Health data often undergoes several journeys in its life cycle: collection, storage, use, analysis, dissemination and disposal. The global health community currently lacks national and community-level policies to effectively manage data during these trajectories. Furthermore, individuals often have little or no awareness of what happens to their health data and who has access to it.

Additionally, there are no universally accepted global or national benchmarks, standards, guidelines, regulations and policies to effectively govern these different journeys and varied aspects of health data. These are necessary to prevent the misuse of health data, reduce missed use of data and to address gaps around missing data.

There is a need for human rights-based, regionally relevant representative principles for participatory and efficient health data governance.

Existing global governance instruments present targeted recommendations for national digital and data governance; but do not specifically address health data. They also do not sufficiently capture the lived reality of communities or primary health care providers in relation to the adoption and use of digital technology and data across different contexts.. Nor do they address the needs of the different stakeholders and communities involved in digital health innovation and health data use.

There is a need for human rights-based, regionally relevant representative principles for participatory and efficient health data governance. Such principles are imperative to building and strengthening a global health data governance framework that will enable the use of digital technologies and data for the public good.

What’s really feasible?

A global governance framework on health data would enable the development and implementation of globally agreed and standardised regulation to govern the vast spectrum of digital health innovation today. Effective digital health governance also requires regional, national and community level guidance and expertise that addresses the cultural and contextual needs of citizens and communities.  Globally unifying principles are a step towards this.

In response to this, Transform Health is currently leading the development of a set of human rights-based and regionally representative Health Data Governance Principles as a first step in the development of a set of global principles, to provide a basis on which governments and multilateral institutions can take forward. These principles are designed to enable equitable and responsible health data management, while safeguarding data privacy, ownership, and security.

What more is required?

Developing principles is a first step towards stronger and more stable national and global health data governance. However, the existence of principles alone will not address health data governance gaps at all levels. Normative standards and national legislation is needed to embed these principles into national law and provide people with the same standards of protection and with that the confidence to share their data for public good purposes.

Transform Health partners held a series of consultative regional workshops that enabled accountable stakeholders to conceptualise key digital health practices that must complement the Principles. These include meaningful benchmarking, impactful intervention design, sustainable intervention scale up, political will, inclusive data management, and more. The Principles must hence be strengthened by further relevant technical and policy guidance that enable inclusive and equitable data governance legislation and policies in different global contexts to be complementary.

The elaboration of legislation and regulation on data governance at the national level needs to be based on equitable and inclusive multi-stakeholder collaboration between governments, private sector, research institutes, civil society and international organisations. This will ensure the process of elaborating such legislation is able to respond to the needs and concerns of different sections of society.

Such solutions are urgently needed to address the associated multidimensional technological, ethical, legal and political challenges. For instance, data collection and storage systems (oftentimes regulated by governments and developed by the private sector) may present reliable data (as evidenced by research), but they must also ensure privacy and safety of citizens contributing their personal data (which may be promoted by advocacy from civil society and guidance from international organisations); this is especially crucial with health data.

What does all this really mean?

There is an urgent and clear need for an overarching health data governance framework that addresses key practical questions around benefit sharing and burden sharing. The Health Data Governance Principles discussed above represent progress towards such a framework. The principles should be developed through equitable and inclusive processes, and include clear definitions, clarifications and guidance on the use and management of health data.

The way governments around the world govern health data has never been more pivotal than it is in this digital age.

The digital transformation in the ongoing ‘technology revolution’ has added an extra dimension to our human subjectivities. Being human nowadays also means being a set of data points. The way governments around the world govern health data has never been more pivotal than it is in this digital age. We all have a role to play to ensure such global health data governance is inclusive and participatory.

Annex 1: Relevant definitions

  • Health Data– Any data that relate to the physical or mental health of an individual, or to the provision of health services to the individual. Any personal data that reveal information about an individual’s health status, such as immunization status, blood pressure readings, and diagnostic results.
  • Data for Health– Data that do not specifically describe the health status of individuals, but are used to support health decisions, such as demographic data, telecommunications data, and weather data.
  • Data Privacy – The appropriate protection of personal data of individuals from other individuals, organisations or entities who have not been given the right to access it. Privacy may also encompass agency: the ability of a citizen to make their own decisions about how their personal data and information are managed.
  • Data Rights– Individual data rights gives people the rights needed to stipulate how their data are used. Beyond data privacy, data rights are seen to include aspects such as the right of people to be secure against unreasonable surveillance and the right to not be unfairly discriminated against based on data.
  • Principle– A foundational rule or belief that governs behaviors, actions, and policies.

Policy (or policy framework)– A set of principles and long-term goals that form the basis of making rules and guidelines and give overall direction to planning and development for an organization.

References

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