Working Together To Strengthen Health Data Governance: Workshop Report

On the 27th of September, Transform Health brought together over 40 stakeholders to strategise on our collective effort to strengthen health data governance. The virtual workshop was an important opportunity to present the latest draft of the civil society-driven Health Data Governance Principles and to discuss plans to finalise and launch them in early 2022. The meeting also sought to build consensus around opportunities to ensure the principles are widely endorsed and used, including in support of a global health data governance framework.

Human rights-based Health Data Governance Principles

Transform Health, together with partners, is stewarding the co-creation of a set of representative and human rights-based Health Data Governance Principles. The Principles seek to align stakeholders around core tenets of data governance to create an environment where all people and communities can share, use, and benefit from health data.

 

There are other important principles out there, such as the WHO’s data principles (which provide a framework for data governance for WHO) and their ethical principles for the use of AI for health, the Principles for Digital Development and Digital Investment Principles stewarded by the Digital Impact Alliance, as well as OECD’s Recommendation on Health Data Governance and their Principles on Artificial Intelligence.

 

However, what is especially distinct about the proposed principles is that they are being developed and driven by civil society. The inclusive and consultative process has brought in diverse perspectives and expertise across geographies, sectors and stakeholders. The principles target governments, developers and other stakeholders that collect health data and can eventually be used as a mechanism to hold them accountable to equity and human rights agendas.

 

Another key characteristic of the Health Data Governance Principles is that they are grounded in Universal Health Coverage (UHC); take an equity and rights-based approach; and support sustainable and resilient public health systems. They include core principles aimed at protecting people and creating health value, while going beyond this to include forward-looking principles around equitably distributing health benefits, towards delivering UHC.

 

What is distinct about the proposed principles is that they are being developed and driven by civil society. The inclusive and consultative process has brought in diverse perspectives and expertise across geographies, sectors and stakeholders.

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

Securing wide endorsement and use of the Principles

At the end of October, Transform Health will launch an open public consultation to gather further inputs on the draft Principles. The consultation will run until the end of Digital Health Week on the 3rd of December. This will allow the Principles to be further refined, supported, and endorsed by an even wider audience. We encourage partners to spread the word wide and far and to carry out their own local consultations to gather insights from diverse stakeholder groups.

 

The Principles will then be finalised and launched at global and regional events at the beginning of 2022. To encourage wide community ownership, they will be hosted on their own website, together with resources to support stakeholders to use and champion them.

 

During the workshop, we heard ideas from partners on how we can secure wide endorsement and use of the Principles at global and national levels. A key point was ensuring meaningful engagement and wide dissemination with a diverse range of stakeholders, including civil society and communities; adolescent and youth constituencies; government, policy makers and parliamentarians; regional and sub-regional organisations and networks; global organisations and networks; industry; donors; health care professionals and relevant associations; patient groups; and research institutes/academia. WHO was identified as an important stakeholder to take a leadership role to help secure endorsement, aligning with other work in this area. Communications tools (tailored for different audiences) and other toolkits were flagged as important assets to support implementation, accountability and to track progress.

 

At the end of October, Transform Health will launch an open public consultation to gather further inputs on the draft Principles.

Working towards a health data governance framework

The Health Data Governance Principles are a critical milestone and contribution towards the development of a global framework for the governance of health data.  During the second part of the workshop, we discussed how to advance this agenda together, to support the use of digital technologies and data for global public good.

 

We  heard from external partners – WHO, Health Data Collaborative’s Data and Digital Governance working group, Edison Alliance, and Young Experts: Tech 4 Health – on various initiatives to strengthen health data governance. This was followed by group discussions where participants highlighted the need to secure political commitment for a framework at national and global levels and emphasised the importance of a multistakeholder approach. Important ideas were discussed on whether the process should be government driven (inviting civil society participation) or civil society driven (to put pressure on government), or whether a two-pronged approach could be explored – e.g. high-level (global organisations and governments), as well grassroots level (youth organizations, community health workers, etc). Opportunities to complement WHO’s work should also be explored, including bringing in civil society perspectives.

 

Participants highlighted the need to secure political commitment for a framework at national and global levels and emphasised the importance of a multistakeholder approach.

 

Partners also highlighted the need to look at the enabling environment to ensure a framework can thrive (e.g. policy, legislation, regulations), as well as how to consider the role of technology providers and software developers.

 

Also read: Building Health Data Governance Principles That Meet Everyone’s Needs

Driving this agenda forward together 

With the proliferation of digital health, and expansion of data linked to this, the need for stronger health data governance has never been greater. It is crucial that health data governance Principles are adopted by governments. These must also underpin and contribute to the development of a framework to ensure participatory, equitable and efficient health data governance so that all people benefit equally from the use of health data, in support of UHC.

 

We urge governments to endorse the principles and the development of a framework at the WHO Executive Board meeting in January 2022 and World Health Assembly in May 2022.

 

We encourage partners and stakeholders to be part of a collaborative effort to help ensure this happens, working closely with governments and the WHO, while also advocating for progress to advance this agenda.

Participate In Digital Health Week: A Global Moment For Digital Health!

Digital Health Week, from November 29 to December 3, 2021, is a global week of action to champion digital health and its role in achieving health for all. The pandemic has accelerated the uptake of digital technology and the use of data to achieve health outcomes. We now need to ensure digital health and data are scaled up and able to deliver universal health coverage by 2030.

During this week of action, organisations will come together to champion digital health, and discuss the barriers and opportunities of digital transformation in their contexts. They will also be able to highlight the work they are doing and discuss with others how they can support, encourage and contribute to the digital transformation of health systems.

Today, we launch the official website, where organisations can sign up and participate, find key facts on digital health, and learn more about the Week.

Go to the website: digitalhealthweek.co

Participating in Digital Health Week

Digital Health Week is open to everyone! Anyone involved in digital health can participate:

  1. Champion the cause of digital health – run social media campaigns, share key messages, publish articles, champion digital health and promote your work.
  2. Host events, launch an initiative, or take an action – organise a public action during Digital Health Week and have it featured as an official DHW Event.
    [Submit your event here!]
  3. Make a public commitment – make a pledge as to how your work will advance the digital transformation of health in your context, and have it featured in the list of public DHW Commitments. [Submit your commitment here!]
Sign up & Participate!
Query? See FAQs!

An opportunity to come together

Digital Health Week offers an opportunity for those working on the digital transformation of health to learn from each others’ work, discover the progress being made around the world, and collaborate to find solutions to the barriers we still face.

The digital transformation of health requires political will. It requires diverse stakeholders to work together on common solutions that will deliver better health outcomes for everyone. Digital Health Week is a moment that allows organisations to engage in this collaboration and conversation in a concerted time frame.

Visit digitalhealthweek.co to learn more. Follow Transform Health on Twitter and LinkedIn, and subscribe to our newsletter for updates on #DigitalHealthWeek.

Note: Digital Health Week is not a Transform Health event or moment. It is a space for anyone interested or engaged in digital health to tell their story and profile their work, in collaboration with others. Transform Health is coordinating the launch of this inaugural Digital Health Week.

RESOURCE: Health for All in a Digital Age
Key Messages for Digital Health Week

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!

Building Health Data Governance Principles That Meet Everyone’s Needs

Transform Health is currently leading the development of globally unifying, human rights-based Health Data Governance Principles that can provide a common vision for health data governance. These Principles are designed to enable equitable and responsible health data policy and governance frameworks at the global, regional and national levels. Being civil society-driven and civil society-oriented, the Principles are aimed to support the safeguarding of data privacy, ownership, and security at different governance levels.

 

Why do we need Health Data Governance Principles?

Digitisation has allowed an exponential increase in the production and use of health data and data for health. This increased availability of timely data offers huge benefits for practitioners, policymakers and individuals seeking to improve personal and public health. At the same time, weak governance of health data risks exacerbating health inequities, perpetuating bias and discrimination towards marginalised communities, and undermining individual health and human rights.

 

A set of globally accepted principles for health data governance that are regionally and sectorally representative is urgently required to redress the uneven distribution of benefits and harms that we currently see arising from the collection, analysis and use of health data. Consensus on high-level principles is an important step towards the creation of a global health data governance framework that could support the use of digital technologies and data for the public good.

 

A set of globally accepted principles for health data governance that are regionally and sectorally representative is urgently required to redress the uneven distribution of benefits and harms that we currently see arising from the use of health data.

 

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

 

A series of consultative workshops

The process of developing the Health Data Governance Principles has been designed to be inclusive and collaborative. To ensure the legitimacy and ownership of the final principles, Transform Health is actively engaging governments, international organizations, civil society, research institutions, and private-sector actors in the co-creation process. Participatory initiatives led by young people, women and marginalized communities are particularly crucial to create a set of Principles that will encourage no one to be left behind in the data revolution.

 

To ensure diversity of perspectives, Transform Health, alongside partners such as PATH, RECAINSA, AeHIN, Governing Health Futures 2030 and Young Experts: Tech 4 Health, has hosted a series of consultations in different regions and with different audiences over the past year. These workshops collected reliable and representative inputs from regional thought leaders from various organizations working on digital rights and data.

 

Here is a list of the consultations that were hosted:
  1. Regional workshop: Latin America and the Caribbean – conducted by Red Centroamericana de Informática en Salud (RECAINSA) on March 11, 2021, facilitated by PATH.
  2. Regional workshop: Sub-Saharan Africa – conducted by the BID Learning Network on March 16, 2021, facilitated by PATH.
  3. Regional workshop: South and East Asia – conducted by the Asia eHealth Information Network (AeHIN) on March 19, 2021, facilitated by PATH.
  4. Regional workshop: Middle East and North Africa – conducted by Mwan Events on March 31, 2021, facilitated by PATH.
  5. Global workshop – conducted by PATH on April 29, 2021.
  6. Global workshop by Wilton Park – co-organised with Governing Health Futures 2030 – 7 July, 2021
  7. Youth workshop (global) by Wilton Park – co-organised with Governing Health Futures 2030 and Young Experts: Tech 4 Health – 14 July, 2021
The first five workshops – four regional and one global – facilitated by PATH for Transform Health, collected insights that fed into the first draft of the Principles. Once the draft Principles were ready, the second set of Wilton Park consultations collected further feedback and input from experts and young experts in two separate workshops in July.

 

Transform Health is actively engaging governments, international organizations, civil society, research institutions, and private-sector actors in the co-creation process.

 

Key insights from the workshops

The workshops explored themes of national and community data governance mechanisms; data privacy and security; infrastructure and applications; human resources; technology and data standards; public engagement; and financial resources.

 

A recurrent challenge that came up across workshops was the lack of interoperable data standards, and fragmented and siloed approaches to digital health and health data governance. Concerns shared by participants included managing cross-border data sharing protocols associated with clinical research, telemedicine, artificial intelligence and collaboration between healthcare facilities such as getting second opinions. Participants advocated for a whole-of-government approach to ensure implementation of the Principles is systematically driven while bearing in mind specific sectoral needs.

 

Most participants from across the MENA region, for example, reported the lack of nationwide strategies of a healthcare specific Information Governance strategy that is a constituent part of the national digital health strategy. In the same workshop, Saudi Arabia’s Health Information Governance Strategy was shared as a case study – it demonstrated an ambitious plan to bridge the information governance gaps across the highly complicated and fragmented healthcare ecosystem in the country.

 

A recurrent challenge that came up across workshops was the lack of interoperable data standards, and fragmented and siloed approaches to digital health and health data governance.

 

Many participants agreed that good health technology would not work without trust in health data governance. Data access can often feel contradictory to data privacy. For example, in Sri Lanka, people are not willing to share data because no patient data sharing policy exists yet. One participant asked, “How do we find the balance between individual data rights and public rights?” There is a lack of clarity on what these data rights constitute.

 

With the lack of transparency in data, health data governance principles must start with informed consent – where patients are fully informed what the data will be used for. Another participant countered by saying that rather than focusing on consent, one should focus on accountability – how exactly will the data subject be protected? The question remains on how to operationalize data policies especially in marginalized communities, specifically in terms of balancing out the state’s need for data and the need to make the process person-centric.

 

Participants also emphasised the need to work with existing multi-sectoral stakeholders so the Principles can have maximum impact when they’re launched. “It is important to think about health data governance within the context of the governance of data. The cross-sectoral conversations that we need to have (between the health sector, governments, and the private sector) about digital health… are around how we make health data governance part of wider data architecture,” said one participant.

 

The youth workshop saw discussions around how youth-led organisations and youth champions could be supported to take ownership of the Principles and hold stakeholders accountable for their implementation. They recommended financial support, capacity building, and more decentralised youth consultations to further develop, amplify and advocate for the inclusion of the Principles by young people.

 

“Youth are hopeful that the developmental process of the Principles will instill accountability mechanisms that are intergenerational, cross-sectoral, and lead to strengthened monitoring and evaluation processes,” said a participant at the youth workshop.

 

Also read: Global thought leaders and experts discuss principles of health data governance – Governing Health Futures 2030

The way forward

Transform Health continues to establish and explore meaningful collaborations with global multi-sector stakeholders for impactful development and implementation of the Principles, and to understand their scope and effect in different countries and regions. We envision the Principles to inform the development of an inclusive and equitable global health data governance framework.

 

After this series of consultations, a workshop for Transform Health members and partners is scheduled on September 27, 2021, offering another opportunity for individuals and organisations to add their input to the next draft of the Health Data Governance Principles. Click here to register for it! Transform Health partners will also organise further national and sectoral level consultations on the Principles later this year.

 

Register for an open session to input on the Principles

A draft set of Principles will be put up for broad online public feedback in October before they are finalised and launched in early 2022.

Announcing Digital Health Week: A Global Week Of Action For Digital Health!

Digital Health Week – a global week of action to advocate for digital health and its critical role in providing health for all by 2030 – will take place from 29 November until 03 December 2021.

Digital Health Week is an opportunity for diverse stakeholders – like professional bodies, the private sector, civil society, academia, governments and multilateral institutions – to advocate for digital transformation in healthcare in their contexts in a concerted week of action.

Organisations from around the world will come together at national and regional levels to host collaborative meetings and events to build consensus, discuss challenges and opportunities, and develop collaborative solutions to move the needle on the adoption of digital health technologies by governments at scale.

Go to the website: digitalhealthweek.co

Digital Health Week is an annual moment open to everyone to make their own! Anyone involved in digital health can participate in the Week by organising events that promote the role of digital technologies and data in achieving health for all, with an underlying focus on equity, human rights and person-centredness.

Sign up & Participate!
Query? See FAQs!

Transform Health is coordinating the launch of the first Digital Health Week at a global scale – focusing on how digital technology and the use of data can help governments, in collaboration with professional bodies, the private sector, civil society, community groups and others, achieve universal healthcare by 2030. It is designed to be an annual event that will give stakeholders the opportunity to move the needle for digital health in a concerted global effort every year.

Transform Health is a global coalition of organisations and individuals committed to achieving Universal Health Coverage (UHC) through the expanded use of digital technologies and data. Digital Health Week is structured to be a multi-owned campaign, in which partners of Transform Health and beyond can take ownership of the campaign and promote digital health in locally relevant contexts.

Why do we need Digital Health Week?

Digital health has been here for nearly two decades. Yet, digital technologies have been regarded as “futuristic” approaches to healthcare that cannot aid development to achieving health for all. It is important to remember that digital health is not the future – digital health is now, and it can hugely accelerate progress towards Universal Health Coverage (UHC)!

“We at PMNCH are committed to advocating for the health and well-being of women, children and adolescents. Digital Health Week is a global opportunity for diverse stakeholders to champion the role of digital technologies and data in making health accessible for all. We look forward to engaging in it #ForEveryWomanChildAdolescent!”
– Helga Fogstad, Executive Director, PMNCH

Despite the availability of the technology, and proven strategies for effective scaling of such technologies, digital health is still being applied in a siloed, patchwork approach that has prevented sustainable and scalable models of digital health from being applied holistically by government health ministries. Further, the lack of digital access and literacy, opaque health data rights, and the absence of equity in health care and global health justice impede progress to universal health coverage using digital technologies.

The tech exists. The case for digital health is clear. What’s missing? Political will.

 

The digital transformation of health requires a sustained conversation between diverse groups of stakeholders in order to ensure that the movement is enshrined in principles of equity, justice and human rights.

Digital Health Week is an opportunity to hear the multitudes of narratives around digital health and collaborate with each other to ensure a truly inclusive path forward. It allows us to come together as a community at the regional and national levels to collectively influence political decision-making and amplify the political will necessary for the digital transformation of health.

“In our work in improving HIV rights and sexual and reproductive health and rights in Kenya, it is no longer possible to ignore the potential that digital health holds in improving health coverage and services. I look forward to Digital Health Week to get involved in the national conversation on digital health transformation in Kenya and find collaborators to advance this mission together.”
– Allen Maleche, Executive Director, KELIN Kenya

What will happen during Digital Health Week?

  • Over 150 organisations from across 20 countries will be involved in hosting or participating in events, meetings, social media campaigns and the like – bringing together different stakeholders like government ministries, private sector companies, academia, civil society, youth bodies and professional bodies.
  • Over 5 million people will be engaged through events, communications and advocacy with information, resources and key messages about digital health and Universal Health Coverage.
  • Organisations will announce public commitments that pledge financial, technical or knowledge resources to advance the cause of the digital transformation of health.

What’s coming next?

Digital Health Week (DHW) launches during the United Nations General Assembly (UNGA) that takes place from September 14-30, 2021.

At the UNGA launch, the DHW website will be unveiled, which will feature a public sign-up mechanism in which organisations can submit:

  • Commitments (technical, financial, programmatic, advocacy etc.) to enable the digital transformation of health in their contexts.
  • Events (roundtables, webinars, trainings, social media campaigns, publication launches etc.) they are hosting during Digital Health Week

 

A vetted list of public commitments and events will soon be displayed on the official DHW website, enabling allied organisations to participate in one anothers’ events, or find new avenues for collaboration in their region or country.

The website will feature the DHW Toolkit, which houses resources, social media material and fact sheets to enable organisations to conduct digital health advocacy in their contexts.

Want to get involved?

Participating in Digital Health Week is an opportunity to have your organisation’s advocacy, launches and events made visible in this global moment alongside hundreds of allied organisations.

Sign up & Participate!
Query? See FAQs!

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.

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.

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.