Young people have charged digital health stakeholders to broaden youth engagement at the national and regional levels to ensure that the development of the Health Data Governance Principles reflects the diverse needs of youth. They want to see global processes rooted in a bottom-up approach that leaves no one behind.
This call was made by youth at a recent virtual event held by Wilton Park titled ‘Governing health futures: Youth consultation on health data governance principles’ organised by The Lancet and Financial Times Commission Governing health futures 2030: Growing up in a digital world (GHFutures2030), in collaboration with Transform Health, and Young Experts: Tech 4 Health (YET4H).
The consultation brought together 28 young experts to review a set of draft Health Data Governance Principles (hereafter: ‘Principles’) scheduled to enter a public consultation period later this year. In follow up to another consultation of global health governance experts held on 7 July, this consultation provided space to hear directly from youth concerning two main questions: (1) do the Principles reflect young people’s needs and priorities with respect to health data governance; (2) how can youth be supported to take ownership and move health data governance principles forward?
The participants were challenged to expand their vision of health. Dykki Settle, GHFutures2030 Commissioner, Co-chair of Transform Health, and Director of the Center of Digital and Data Excellence at PATH, urged the attendees “to not look at digital health the way you see it today, but how health looks within the digital transformation.”
Marwa Azelmat, Co-chair of Transform Health’s Data Policy Circle and YET4H Facilitator emphasised the timeliness of the consultation: “The Principles are needed in times of uncertainty and shifting mindsets; we are going towards universality which is rooted in location ownership. This is good for the nexus of youth, technology, and movement building.”
"Young people want to see global processes rooted in a bottom-up approach that leaves no one behind."
Principles that reflect young people's needs and priorities
Youth participants emphasised that the Principles must be easy to understand, avoid jargon, and difficult terminology if they are to translate easily into different languages and be understood by all. Using language that is straightforward reinforces inclusivity not only for the success of these Principles but also to broader digital and health governance transformations.
Connecting existing accountability mechanisms and creating new ones is important if these Principles are to be forward-looking. Not only are these Principles grounded in equity, ethics, and a human rights-based approach to health, their development has been driven by Civil Society Organisations (CSOs) and developed by national digital health leaders. Involving all stakeholders from conception to evaluation addresses power imbalances that can skew accountability mechanisms while simultaneously supporting sustainable trust infrastructures. 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.
The Principles need to strike a better balance between the individual and the society. They should look for intersections and not bifurcate the two. Youth are concerned that a user/patient-centred design is not yet fully realised in the draft Principles. A strengthened focus on user data protection to avoid data piracy while promoting interoperability and accessibility of personal health data is needed. At the same time, it was clear that a public value is attached to health data and therefore a broader conceptualisation of data solidarity is required in the Principles. If the ultimate goal is realising Universal Health Coverage (UHC), then the framing of these Principles must better articulate data as a public good.
Lastly, youth were concerned that the draft Principles are lacking in how they account for the various groups of people the Principles are designed to protect. “Young people are not homogenous. They are complex and the Principles will translate very differently across different subsets of young people. Let’s continue to have more diverse youth representation to analyse the Principles and make them robust and equitable for all,” said consultation participant, Sahil Tandon, YET4H and Packard Foundation. Taking inspiration from the United Nations Convention on the Rights of the Child’s General Comment 25 on children’s rights in the digital environment, youth participants echoed that the Principles should offer legal protections to safeguard the rights of adolescents and minors.
"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."
Moving the Principles forward
A significant highlight of the consultation were discussions around how young people and youth-led organisations can be supported to take ownership of the principles and hold stakeholders accountable for their implementation. Youth participants called upon donors, CSOs, and governments to invest in the following three priority areas:
Financial Support: Donors and other actors supporting digital health and data advocacy need to prioritise funding to youth-led organisations. At present, youth-led organisations are not well funded to take ownership and lead advocacy and campaign efforts to make the Health Data Governance Principles reflective of youth needs and priorities. Adequate funding will ensure that youth-led organisations have required staffing, strategies, and programmes to support the implementation of the Principles
Decentralised Youth Consultations: To ensure the Principles remain relevant to young people, broader and more frequent consultation of young people at all levels – from global to local – are needed. Young people want a paradigm shift away from one-off consultations to more participatory processes in which they are continuously engaged in the planning, development, and implementation of the Principles
Capacity Building: Youth called for capacity support to better understand the Principles and communicate their values and social relevance to broader youth populations. Such capacity building should focus on digital health and data literacy to empower young people to support the implementation of the Principles and hold leaders who commit to them accountable.
Given the appropriate capacity and funding, young people are ready to take ownership of the Principles and support policy reforms to ensure that future health data governance frameworks consider youths’ needs and improve their health and well-being while protecting their rights.