In 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.