Achieving UHC through an inclusive and rights-based digital transformation

Peggy, addressing bias and discrimination in AI, emphasised the critical need to scrutinise how bias is introduced and ingrained within the datasets that support AI systems. She stressed the profound implications this has, especially in healthcare decision-making. Peggy also highlighted the necessity of encrypting digital tools to uphold data privacy.

Sarah Simms, Policy Officer at Privacy International speaking about digital technologies posing risks not just to the right to health, but broader human rights highlighted that, “Too often governments and industry see new opportunities to exercise power over individuals such as surveillance of marginalised communities, income generation, market domination, and control. Digital technologies can be data intensive, we must remember that health data is sensitive data as well as being personal and unique to us and requires additional protections. Without careful consideration of the impact and the risks, the promises which are meant to come with innovation and technological advancements may not be realised, and in the many cases they may create more harm than good.”

Ilona Kickbusch, Director of the DTH-Lab, emphasized the lab’s strong interest in young people, highlighting that “At the DTH-Lab, we have an enormous focus on young people, we encourage young people to develop things, and one of the things they have developed is the very first step towards a blueprint of digital first health systems for young people. It is important that we think along the lines that many young people live in countries where there is no access to Universal Health Coverage or Primary Health Care and there of course, the question then is in what kind of way would a digital first health system be structured, how would it be financed, what human rights issues emerge from it, and how much should the private sector, public sector, and the innovators be doing to harness the potential of digital transformations for young people’s health”.

Caleb Masusu, Youth Representative Restless Development narrowed in on the concerns of young people with respect to the promotion of UHC through a rights based digital transformation stating that “For young people we believe that there is still a gap in terms of health literacy, in terms of our rights, and in terms of how we young people can access digital technologies and protect ourselves online. Challenges young people still face include a lack of digital literacy, gaps in digital divide as well as issues to do with data security. It is crucial that young people should be brought on board when designing health systems.”

Dr Meike Schleiff Scientist with the Alliance for Health Policy and Systems Research (WHO), speaking on what the WHO is doing to address and support the government’s, private sectors and young people in the development of digital health standards for implementation, stated that “Looking at the Global Initiative on Digital Health, there’s a lot more work to come. We are really working to feed in evidence-based research generated mostly by universities, civil society groups, in close collaboration with policymakers at the national and subnational levels so that we are hearing from the people who have to make the hard decisions, who are the ones having to care for patients and who are the patients themselves. Our aim is for them [patients] to be able to access their own data, finding ways to be able to have a more integrated experience of care but also navigating the uncertainties, concerns and challenges that occur.” Meike, highlighted the importance of the Global Digital Compact emphasising that it is an opportunity to bring together not only UN agencies but a lot of other voices as well and it is another opportunity to build a global consensus and convene partners to work together. 

Caroline Knop, DTH-Lab Regional Youth Champion, spoke about the newly launched DTH-Lab global report on building a blueprint for Digital First Health Systems. 97 young people from 36 different countries around the world participated in the online global consultations on digital firsts health systems. They all agreed that it is important to have a human-rights based approach at the centre of a digital first health system. Caroline underlined that digital first does not mean digital only, and explained that, a digital first health system is one where digital platforms or technologies are the initial entry point to a health system which can also mean the inclusion of other physical and in-person features. The most important values identified by young people include a system that is equitable, trustworthy, ethical and inclusive. 

Allan Maleche, Executive Director of Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN), discussed the current legal frameworks concerning digital health and the ethical considerations of their use. He pointed out the absence of a unified human rights instrument specifically addressing digital rights.

The insights obtained thus far underscores the need for laws and rights that allow the use of digital health technologies in a way that enhances human rights while creating a balance to safeguard people’s health data and protect their rights.