TRANSFORM HEALTH ANNUAL REPORT

2021

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Progress towards Universal Health Coverage has sped up this decade, with digital tools and technologies playing a significant role. The COVID-19 pandemic demonstrated the possibilities of digital tools – improved surveillance and testing, large-scale sharing of public health messages and telehealth services, for instance. It also, however, displayed the ground we have yet to cover – inequities in access to digital health services, unregulated surveillance technologies and lack of health data governance are only some of the threats to equitable access to health for all on a ‘glocal’ scale.

 

These developments have made the work we do at Transform Health more urgent and more relevant. Our work continues with the necessary momentum to keep pace with the digital health transformation that continues to be one of the top priorities as the world emerges from the pandemic. We also look forward to taking forward the recommendations of the Governing health futures 2030: Growing up in a digital world report launched at the World Health Summit 2021, on the governance and accountability frameworks necessary for equitable digital transformation. 

 

We are proud to share the progress that we have made towards our three strategic objectives – building political will, advocating for a health data governance framework, and enabling increased and coordinated investments towards digital transformation – in this annual report.

Christoph Benn

PRESIDENT

Transform Health

NANJIRA SAMBULI

VICE PRESIDENT

Transform Health

LOOKING
FORWARD

An Interview With Our Executive Director

MATHILDE FORSLUND

EXECUTIVE DIRECTOR

TRANSFORM HEALTH

As 2021 draws to a close, what were the year’s key takeaways for you?
When we set up Transform Health in 2019 we could not have anticipated the strides digital health would take in establishing itself in such a short period. Though we regret that it took a pandemic to achieve this significant leap forward, we need to double down our efforts to ensure that the gains achieved during these exceptional last two years are not lost as we transition to a post COVID-19 context. 2021 was a pivotal year for Transform Health as we assessed and responded to new challenges, notably through the launch of our new and ambitious three-year strategy. The ongoing pandemic did impact on our initial plans, and we were unable to officially launch Transform Health during the United Nations General Assembly. To galvanise the sector, build consensus and announce ourselves publicly we set up a new global week of action – Digital Health Week – to champion health for all in the digital age. Digital Health Week was a great success. Seventy organisations from 40 countries participated – hosting events, making public commitments and amplifying the role of digital health in UHC. The active engagement, especially at the country level, confirmed the need for such a moment. We look forward to expanding Digital Health Week in the years to come.
How did Transform Health progress as a coalition in the past year?
As Transform Health grows and matures, our governance structure has continued to evolve, with the setting up of the Transform Health Association at the end of 2020 and the development of the coalition’s governance charter and operating policies. These policies included the coalition’s Equity and Inclusion plan, which contains measurable objectives to hold us, and our coalition members, accountable to our principles and ensure meaningful engagement of youth, women and marginalised communities. We continue to work closely with our partners, Young Experts: Tech for Health (YET4H) whom we host and whose representatives sit on and co-chair all our decision-making circles. This year, we have also increased our representation of co-chairs and members of our working circles from Low and Middle Income countries, who lead the strategic direction of the coalition. In 2021, we also identified six priority countries – Indonesia, Kenya, India, Ecuador, Senegal and Mexico – in which we would carry forward the coalition’s objectives at a national level, after a rigorous selection criteria. In Kenya and Indonesia, we selected and recruited national organisations – KELIN and IAKMI respectively – to set up Transform Health Kenya and Transform Health Indonesia. Transform Health also made progress on the Health Data Governance Principles, discussing and approving its early drafts, and then launching a public consultation for input after a series of regional and global workshops on the same. These Principles will underpin our advocacy work around a global health data governance framework in the coming years.
What comes next for Transform Health?
In 2022, Transform Health is focusing on developing stronger ties with our regional networks and national coalitions and expanding our partnerships and movement on the issue of health data governance. Through our campaigning and advocacy work we aim to influence the adoption of a common global set of standards on health data governance that can be adopted and adapted by all countries. This includes the endorsement of the Health Data Governance Principles that are being launched on World Health Day 2022, and launching a popular mobilisation campaign on increasing awareness on the equitable governance of health data. Under our third coalition objective on increasing resources for the digital transformation of health systems, we are developing a conceptual framework for an investment case on digital health. This will provide an evidence-base to prioritise investment areas and define the global level of investment necessary to support the financing of digital health transformation, which will be a baseline of our advocacy in the years to come. Finally I’d like to thank the Executive Committee, co-chairs, Transform Health’s Enabling Function team, and all of you – our partners and donors. Though we face new challenges as a community, we rise together to meet them as a global coalition. I hope you will enjoy reading our annual report with a quick glance of how we have advanced our work around our three key objectives over the last year.

2021 AT A GLANCE

HOW WE ADVANCED OUR THREE KEY OBJECTIVES AS SET OUT IN OUR COALITION STRATEGY.

Calling for a global health data governance framework

Facilitating more and better funding for digital health

ADVANCING THE DIGITAL TRANSFORMATION OF HEALTH

TRANSFORM HEALTH HAS THREE STRATEGIC OBJECTIVES, SET OUT IN OUR COALITION STRATEGY.

BUILDING CONSENSUS AND POLITICAL WILL

Recognition of the fundamental role of digital technologies and data use to transform and strengthen health systems to expand primary health care as an essential foundation for achieving UHC by 2030.

A globally unifying data governance framework

To allow for full beneficial, impactful, and responsible management of health data, while safeguarding data privacy, ownership and security.​

Increased and coordinated domestic and international financial investments

For strengthening digitally enabled primary health care systems and empowered communities to achieve UHC by 2030.​

2021

IN 2021, WE TOOK CONCRETE STEPS ACROSS EACH OF OUR OBJECTIVES TO ADVANCE THE DIGITAL TRANSFORMATION OF HEALTH.

I

Building consensus and political will

A government’s political commitment, or its political will, to address an issue is manifested in the policies, regulation, legislations and funding directed to a specific sector or issue. Strong political will is reflected in a government’s determination to drive an agenda forward. To this end, in 2021, Transform Health set up two national coalitions to build that political understanding and commitment to change at national level. We also worked closely with regional networks and through global moments and events to build greater demand across different sectors, including civil society, academia, the private sector and policy-makers among others, to generate greater political understanding and support for the inclusive and equitable digital transformation of health systems in LMICs.

Transform Health’s national coalitions

Map-1

We embarked on the process of establishing Transform Health coalitions in priority countries. We identified six priority countries – India, Indonesia, Kenya, Senegal, Ecuador and Mexico – and started the process of recruiting national coordinating partners in Indonesia and in Kenya. In 2022 we will establish the coalition in India and in Ecuador and in 2023, in Senegal and Mexico.

 

In collaboration with partners in Kenya we selected the Kenya Legal and Ethical Issues Network on HIV and AIDS – KELIN to act as Transform Health’s National Coordinator. KELIN advocates for a holistic and rights-based system of service delivery in health and for the full enjoyment of the right to health by all, including the vulnerable, marginalised, and excluded populations.

 

In Indonesia we selected the Indonesian Public Health Association – IAKMI, a membership organisation that includes over 35,000 health workers across 34 provinces and renowned for its technical expertise.

 

Once selected, these national coordinators conducted a landscape analysis that focused on the broader challenges and opportunities for digital transformation and the use of data to achieve UHC. Through an iterative process, the Enabling Function supported our national partners to develop their strategies, project plans, monitoring and evaluation frameworks and budgets. Learnings from the onboarding of IAKMI and KELIN have been codified into a process and a set of templates that will be used with subsequent partners.

Allan Maleche

EXECUTIVE DIRECTOR

KELIN - NATIONAL COORDINATOR, TRANSFORM HEALTH KENYA

KELIN is excited to coordinate a coalition of like-minded organisations that is Transform Health Kenya to advocate for an enabling legal and policy environment and to hold the government accountable.

For us, success is a Kenya where citizens are aware of their digital health rights; data privacy and accountability is prioritised and violations sanctioned; and a collective voice calling for a rights based approach to digital health where vulnerable communities including people living with HIV, key and affected populations see an end to discrimination and enjoy their rights to health.

Regional Networks

Our partnership has been an important collaboration based on co-creation principles, and a learning experience that has enabled us to advocate effectively at the national and regional level in Latin America and the Caribbean to advance digital transformation of health and achieve UHC. Together we are stronger!

Daniel Otzoy

EXECUTIVE DIRECTOR

CENTRAL AMERICAN HEALTH INFORMATICS NETWORK (RECAINSA)

Transform Health recognises the critical role of technical experts across different regions. Many of these experts are voluntary members of regional networks such as Asia eHealth Informatics Network (AeHIN), Central American Health Informatics Network (RECAINSA), and Health Informatics in Africa (HELINA). As members of these networks, they support each other with knowledge and information exchanges, and share their expertise to support governments and others to implement digital health solutions that will accelerate UHC.

 

We have partnered with these networks and are providing support to enable them to use their technical expertise and thought leadership to influence regional and national bodies to accelerate the pace of digital transformation in health. We are also working with Speak Up Africa and the Baobab Institute to set up Transform Health West Africa, a regional hub of experts and health campaigners in West and Central Africa. In 2022 we will be collaborating far more closely with regional networks to raise the profile of digital health and to highlight digital health solutions that can be applied at scale to accelerate UHC.

Global outreach and influence

To extend our influence on decision makers at the national level it is important to influence the agenda of global platforms and events where broader agendas are set by governments and others. Among these decision making fora are the World Health Assembly, the G7, the UNGA, the G20. This year we engaged in all four events. We issued a joint public statement with our private sector partner the Digitally Connected Care Coalition for the World Health Assembly, that was subsequently picked up by our regional partners RECAINSA.

 

We set up two working groups with coalition partners to engage in the G7 and in the G20. This ensured collective decision making on key issues, in particular the positioning that Transform Health was taking in relation to the G7 and G20. It also enabled the effective sharing of knowledge and information on government positions across different countries.

 

We met with UK government representatives in advance of the G7 summit to present them with our recommendations, which we also shared with our civil society partners. We then worked with civil society partners to encourage them to adopt our recommendations. We were pleased to see digital health included in the Final Leaders Statement for the first time and we issued a public statement cautiously welcoming this.

 

For the G20 we actively engaged through the Civil Society 20 Group, contributing to their position papers and statements, and ensuring digital health was prioritised in particular in the policy pack that represents global civil society’s collective call on G20 leaders. We ensured all information was fed back to our coalition partners in the G20 Working Group. We developed a set of recommendations that we circulated to all our partners engaged in the G20 Working Group for them to use in their government lobbying. We then issued a statement in response to the final Health Ministers’ Declaration expressing our disappointment with the final outcome. Through these engagements Transform Health is actively engaging in global conversation that have national level consequences on policy and funding priorities.

 

Other events we participated in include the Global Digital Health Forum, the African Health Agenda International conference (AHAIC), the AeHin Annual Conference, the Women in Technology Global Forum, the Medicus Mundi Symposium, International Planned Parenthood’s East and South East Asia Regional Forum, the Resilient Health Futures event, the Johnson and Johnson (J&J) Forum for the Future, and the Edison Alliance Health Meeting, the UN75 dialogue, and the World Health Summit.

Digital Health Week 2021: The First Global Week of Action For Digital Health

A great success of 2021 was the launch of Digital Health Week, a moment that brought together our partners and other organisations worldwide to champion the role of digital health in their countries and contexts.

Transform Health created this space for organisations to set up and run their own events in their country and region. Digital Health Week is a moment, and an opportunity for organisations to tell their own stories, promote their own work, champion successes and highlight challenges, and importantly, to collaborate with others to accelerate the adoption of digital health to achieve Universal Health Coverage (UHC).

The events held during Digital Health Week brought together organisations such as the World Health Organisation, GIZ (German Development Cooperation), the Indonesian Public Health Association (IAKMI) and the Brazilian Association of Telemedicine and Telehealth. Organisations convened key stakeholders such as government ministers, CEOs of private companies, civil society organisations, youth and marginalised groups, including the participation of the Ministries of Health of Indonesia, Zanzibar, Bhutan, Lao PDR, India and Ghana.

Organisations also ran campaigns, published articles and podcasts, and shared best practices. Digital Health Week saw important conversations and shared learnings from digital health programs in low and middle income countries, the funding of digital health transformation, power imbalances in the collection and use of health data, how to govern health data ethically, and the interoperability of different platforms to strengthen health systems.

80

EVENTS

71

ORGANISATIONS

06

GOVERNMENTS

40

COUNTRIES

38

COMMITMENTS

10,000

PARTICIPANTS

“DHW gave AeHIN the opportunity to share member country knowledge, their current digital health projects, and create awareness on the importance of digital health foundations, especially governance.”

JAI GANESH UDAYASANKARAN​​

Asia eHealth Information Network (AeHIN)

“Transform Health’s initiative has come at the right moment. We are at a point where mobile and e-health must be integrated into the delivery of health services. The benefits of digital health are enormous – so much so that we need to all come on board to put in the driving force.”

Hon Dr. Nana Ayew Afriye

Chairman, Parliamentary Select Committee on Health, Ghana.

“The 2021 Digital Health Week reinforced the commitment of Transform Health Indonesia to achieve the digitalization of primary health care services in Indonesia by harnessing digital technology and use of health data to achieve UHC by 2030.”

Pak Ede

Executive Director, IAKMI

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Making the Case for Digital Health: Accelerating Progress towards UHC

Transform Health also hosted its own event during Digital Health Week, in partnership with Fondation Botnar, the Civil Society Engagement Mechanism for UHC2030, Medicus Mundi Switzerland and AI for Good (ITU). The event brought together government representatives, international organisations, civil society, youth representatives, and industry representatives to hear diverse stakeholder perspectives and commitments to advance this agenda. This event marked the first public launch of Transform Health.

 

The event featured the launch of a new report by Transform Health, The case for digital health: Accelerating progress to achieve UHC. The report features six key recommendations for governments and companies to push for the digital transformation of health. These recommendations will guide Transform Health’s advocacy and campaigning over the coming years.

II

Health data governance framework

During 2021 we made great progress towards our second strategic objective, ensuring the creation of a global health data governance framework that would protect individuals rights to privacy and security while enabling health data to be used for public good.  We worked with partners to develop a set of Health Data Governance Principles that are equitable, inclusive and human rights based. We will be using these to influence the creation of a global health data governance framework.

 

These Principles have been developed with strong participation from civil society and youth across five of the six WHO regions. We collaborated with partners to develop workshops in Latin America and the Caribbean, Sub-Saharan Africa, South and East Asia, the Middle East and North Africa. Two further global workshops and a global youth workshop were also held. Over 185 individuals from 134 organisations participated in these consultations. To ensure further engagement in the elaboration of these principles, we launched a month-long public consultation on the draft Principles, in October. We published an article on the participatory process of building Health Data Governance Principles.

8

PRINCIPLES TO GOVERN THE USE OF HEALTH DATA, DEVELOPED IN CONSULTATION WITH OVER

200

INDIVIDUALS

FROM

137

ORGANISATIONS

As part of the public consultation, we developed a set of resources to support organisations to carry out their own local consultations to increase engagement in the process. This enabled us to gather a broader set of perspectives on the Principles.

Throughout this process, we have been calling for governments to support the creation of a Global Health Data Governance Framework, which the WHO are currently conceptualising. To that end, we have developed a longer-term strategy to push for a global health data governance framework that would establish a set of global standards for all countries to domesticate into national legislation.

We have also participated in the WHO Health Data Governance Summit, to influence the agenda of the WHO, the Global Digital Health Forum, the Health Data Collaborative, and the Digital Health and Interoperability (DH&I) Working Group hosted by Digital Square/PATH.

“ Youth are hopeful that the developmental process of the Principles will instil accountability mechanisms that are intergenerational, cross-sectoral, and lead to strengthened monitoring and evaluation processes. ”

– Anonymous youth participant at one of our consultative workshops.

III

Increased & coordinated funding

Our third strategic objective seeks increased and coordinated funding that is effectively spent to enable the digital transformation of health systems in low and middle income countries (LMICs).
In collaboration with our partners, we are developing a conceptual framework to define the rationale, positioning, scope, and approach for a full investment case. This investment case will outline where resources need to be channelled, and in what manner they need to be disbursed in order to accelerate the inclusive and responsible digital transformation of health systems in LMICs.

While investment cases are usually developed by institutions providing funding for a specific issue, the lack of a specific funding instrument or institutional leads in the digital health ecosystem means that we have taken on this task on ourselves. The conceptual framework will have many of the elements of a full investment case and lay the basis for a more substantive set of proposals for donors, multilateral institutions and national governments to take forward.

To complete this project, a Global Research Consortium (GRC) was established. The GRC is constituted of regional research partners representing LMICs, partners from various international organisations and young experts who will contribute to the development of the conceptual framework.

Reflections ON an eventful year

2021 was a busy year for Transform Health. We formally announced the coalition and our commitment to work with partners to advocate for the enabling environment necessary to ensure the digital transformation of health systems. As we move into 2022, we will be prioritising our work on health data governance and pressing hard to ensure we have a WHA resolution that will establish a set of global standards, and work with coalition partners to take forward our strategy at the global, regional, and subnational level. As we consider our work over the last year we have a number of critical reflections:

1. Measure what you care about: developing equity and inclusion indicators
Transform Health was set up with the aim of supporting and encouraging the leadership of youth, women and marginalised communities. To implement this commitment we have built youth leadership into our governance structure and decision making processes and developed a set of indicators to map our equity and inclusion goals. Our Equity and Inclusion plan includes ambitious goals and a concrete set of targets that will ensure the meaningful inclusion of youth, women and marginalised communities, as well as decision-making and leadership from organisations headquartered in low and middle income countries (LMICs). These goals range from representation in our decision making processes (circles, working groups etc.) to active engagement in recruitment of national coordinating partners, as well as ongoing campaigns and advocacy efforts. These equity and inclusion indicators enable us to stay accountable, transparent, and continually take stock of our progress.
2. Contextualise: wiring flexibility into the setup of our national coalitions
As we moved towards establishing a third Transform Health national coalition in India this year, we recognised the need to remain agile in our strategic planning. Transform Health is a coalition in which local expertise and decision making are highly valued. After talking to a number of our Indian partners, Transform Health decided to embark on a state selection process in India, which differed from the approach taken in Indonesia and Kenya. This was an important decision that departed from our approach in other countries. This decision was based on an appraisal of the realities of a country as diverse and complex as India. As a result, our initial timeline for India has been significantly impacted as we will start off a comprehensive assessment process in 2022 to determine which state the Indian coalition will focus on. This reaffirmed the need for Transform Health to remain agile and work with local partners to determine the best approach and model for a particular setting. Maintaining this agility will form an important part of our strategic decision making moving forward. There is no “one size fits all” when it comes to establishing a national coalition. Each coalition requires its own special consideration, which involves significant consultation and engagement from local partners and stakeholders to ensure buy-in and ownership from the beginning.
3. Facilitate collaboration: bringing partners together behind a common agenda is powerful!
When we conceived of Digital Health Week this year, we did not expect it to receive the wholehearted support from the community at both global and national levels. The global week of action brought together stakeholders across countries and regions to communicate and discuss the challenges and opportunities of digital health in various contexts. During Digital Health Week our role was very much that of facilitator. Through Digital Health Week we learnt of the great appetite across the sector for collaboration and shared learning. We also learnt that while there are strong networks and collaboration on the technical side, many organisations are facing regulatory and legislative and funding challenges that are affecting the whole sector and that are not effectively being addressed.

Building consensus AND stronger political will

Increasing the coalition’s membership to 42 organisations across 16 countries.

Advancing coalition objectives at national and regional levels, including setting up the first two national coalitions in Kenya and Indonesia.

Establishing strategic partnerships with three regional networks and supporting the formation of a fourth one in francophone West Africa.

Engaging with G7 and G20 to push for digital transformation of health, as well as 15 other events and moments worldwide with varied stakeholder groups.

Organising a successful first Digital Health Week with participation from over 70 organisations from 40 countries to discuss digital transformation in their contexts, including active engagement by six government Ministries of Health.

Launching the ‘Case for Digital Health’ report at Digital Health Week with six clear calls to action for governments and decision makers, as well as to guide Transform Health’s future work.

Calling for a global health data governance framework

Stewarding the process of developing a set of globally unifying, human rights-based Health Data Governance Principles, to be launched in early 2022.