Young people must be given a voice in crafting their digital health futures
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For millennials and the digital natives of Generation Z, the use of technology is second nature. It brings advantages such as fostering interpersonal interconnectedness and expanding access to education and work opportunities.
As The Lancet and Financial Times Commission on Governing Health Futures argues, digital tools to support the health of children and young people should be accessible while also being safe and ethical.
It is paramount that young people are given a voice in shaping their digital health future. A new form of intergenerational collaboration that engages them directly should be the standard in the digital world.
A fundamental tenet of such user-centred design is that the users of a given technology or service are the experts, and their views, at least as much as business factors, should inform and influence the development and deployment of digital platforms.
Failure to take this principle into account, particularly in a field as sensitive as health, will result in a consumer backlash directed towards companies and governments. In the US, Democrats and Republicans alike have stepped up their scrutiny of Silicon Valley in response.
One approach is the development, training and use of public interest technology (PIT), a new professional field that adopts best practices in human-centred design, product development, process re-engineering and data science to solve public problems in an inclusive, iterative manner.
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Rather than simply using surveys or focus groups, it engages more actively with the public — including groups that historically have not had a voice — with continuous learning and improvement to produce better outcomes.
Many colleges and universities now offer PIT training, and a book, Power to the Public by my colleagues Tara Dawson McGuinness and Hana Schank at the New America Foundation, a think-tank in Washington DC, describes the emerging profession.
Examples include giving youth a say in the design of apprenticeship schemes, and participatory technology assessments. A team led by Mahmud Farooque at Arizona State University’s Public Interest Technology programme, for instance, helped gather input for Nasa’s Asteroid Initiative. That resulted in the identification of a gap in Nasa’s capacity to co-ordinate on planetary defence, which led to the creation of a new office in the agency. Public input also helped inform Nasa’s decisions around asteroid diversion and its missions to Mars.
Public interest technology can help avoid the risk of tokenism, where some voices are only included as a box-ticking exercise, rather than being given a formative role. It debunks the myth that non-experts do not bring value to complex or technical topics such as digital health.
Another solution is to give youth a say and harness their expertise when developing digital health standards, even in response to crises. For example, the World Economic Forum, the UN Children’s Fund, toy company Lego and the Canadian Institute for Advanced Research, among other organisations, are refining artificial intelligence standards for children, in collaboration with an AI Youth Council.
The project involves drawing up policies that ensure equitable data practices and the safe handling of data on the real-time movements of children that could become a permanent part of their digital footprint — an issue that older generations never encountered. In November, IEEE, a technical professional organisation, published a new standard to address age-appropriate design for children’s digital services.
David Walcott, who co-chaired the Covid-19 task force of the World Economic Forum’s Global Shapers Community, a network of young people, has argued that youth insights have been valuable in supporting digital health objectives during crises.
At the start of the pandemic, the company Walcott founded, Novamed Health, took advantage of the high levels of digital literacy among young people by working with them. Together, they developed a user-friendly online tool to manage Covid-19 test bookings and results, appointments and test results for Covid-19 for the University Hospital of the West Indies in Kingston, Jamaica.
There is no silver bullet to achieve the goals outlined in The Lancet and Financial Times Commission report. But, by investing in PIT education and elevating the voices of youth when designing digital health policy and governance tools, we can ensure such platforms are truly designed for the people.
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