The Right to Health and Digital Technologies

Transcript of statement made at the 14th Global Forum on Health Promotion: Digitalization as a Growing Determinant of Health and Well-being: Getting It Right, 21 November 2024 organized by the Alliance for Health Promotion

by Alexandra Finch, FCGH Alliance

Today, I will talk about the Summit of the Future, looking at the role of civil society in health promotion in this process and beyond, then look at the impact of digital tools on the right to health and, finally look to see how we can further implementation of the Summit’s health commitments and promote the right to health in the digital transformation of health, both through a Framework Convention on Global Health.

Health Commitments at the Summit of the Future

I had the pleasure of attending the UN Summit of the Future. Its aim was to accelerate progress toward the Sustainable Development Goals (SDGs) and build a better international system to service current and future generations. There, Member States adopted some outcome documents, the primary one being the Pact of the Future which had five important actions related to health.

They also adopted as an annex the Declaration of Future Generations, in which countries pledged to protect the right to health, including through universal health coverage, build and strengthen resilient health systems, and ensure equitable access to health products, particularly for young people. The second annex was the global Digital Compact. As Professor Scott already explained, it is a comprehensive document in which, importantly, countries commit to protecting online spaces that are safe for users’ mental health, bridging the digital divide through connectivity, and promoting human rights. So, there’s some really important developments that came out of that annex.

Overall, as we review these outcome documents, civil society organizations are pleased to see that health dimensions were mentioned. The Digital Compact actually went quite far. However, we are disappointed that the commitments in the Pact relied on previously agreed formulations rather than introducing any new, comprehensive, concrete commitments such as timelines, targets or new dedicated resources to advance or fulfil these health commitments.

Questions remain about how UN Member States can be held accountable to the commitments made at the Summit. Civil society’s role is very clear: providing some of these accountability mechanisms. Civil society for a long time has played a really important role in securing the right to health through means like advocacy, monitoring the implementation of health initiatives by governments, delivering health services directly to communities, and holding governments to account for their promises.

As part of the process of the Summit of the Future, there was a health impact coalition; a formalized coalition of over 300 health-related civil society organizations that played an instrumental role in getting health on the agenda at the Summit. The coalition demanded that right to health be a cross-cutting theme in all of the outcome documents.

The Right to Health and Digital Technologies

We’ve heard a lot of wonderful examples today of digital health advancements. Digital technologies have been heralded as a panacea to address gaps in the delivery of health services, and they can strengthen governments’ abilities to respect, protect and fulfill the right to health. But they can also perpetuate harms if they’re not consistent with human rights.

From a rights perspective, digital technologies for health must at minimum satisfy the four core elements of the right to health: availability, accessibility without discrimination, acceptability and quality. In terms of availability, telehealth can help overcome some of the barriers like shortages in health care workers in communities.

On the accessibility front, technology gives patients access to care where they might not have it in their communities and which means providing greater access to people with disabilities and people in remote communities. And it’s usually less expensive, in terms of cost and time taken away from work compared to accessing in-person care. Young people are particularly receptive to using technology which means that they can overcome other barriers like stigma to accessing certain health care services. And technology has expanded access to medication abortion which is very important for sexual and reproductive health rights.

On acceptability, digital health services can remove cultural and linguistic barriers to health particularly where those services are designed through inclusive processes. And on the quality front, AI and data sets can provide personalized treatment plans, can automate symptom-based case identification, and improve efficiency in the delivery of health services.

Though, as Professor Scott mentioned, we’re seeing a really rapid digital transformation which risks rights infringements where proper safeguards aren’t built in. The digital divide can entrench health inequities, particularly for low-income populations, where connectivity is a real issue and for older persons who may not have as much digital literacy. Big data sets can entrench multiple types of discrimination if human rights safeguards aren’t built in. There have been documented instances of differentiated treatment with the use of AI models. There’s also a risk of divestment from the underlying determinants of health if digital health services are prioritized. Relying on digital technologies carries risks like data breaches and potential deliberate misuse of data for, for example, checking somebody’s immigration status can infringe the right to privacy.

Transformative Potential of a Framework Convention on Global Health

A Framework Convention on Global Health would support the two goals of providing concrete means for implementing the Summit’s health commitments and pledges and acts as a charter to uphold the right to health in the transforming digital space.

For those you are not familiar with the Framework Convention on Global Health, it is a proposal for a binding global health treaty grounded in the right to health and aimed at achieving national and global health equity that is largely civil society led. The power of such a treaty comes from specific standards and mechanisms that would go beyond existing human rights treaties to accelerate the right to health and improve accountability for the right to health. I really encourage you who are interested to learn more to check out our website at FCGHalliance.org to get more details on all the elements of this proposed treaty.

A mechanism like this treaty would support countries’ commitments made in the Pact for the Future including the pledge to protect the right to health. For the commitment to take measures to eradicate poverty through investments in health, a global treaty could propose obligations to ensure the maximum of available resources are directed to fulfilling that right through a global health financing framework and with targets for domestic health financing and for international health assistance. These would be linked to national health strategies and health equity programs of action. Similarly, this proposed convention would create accountability mechanisms for the right to health, including for sexual and reproductive health rights, that would also accelerate progress towards universal health coverage as underpinned by the right.

In terms of the Digital Compact’s commitments, one of the core mechanisms considered by this framework convention is a right to health impact assessment. Policies governing any digital systems would need to undergo a right to health impact assessment to guide policies to mitigate potential risks, such as the mental health risks associated with the digital health transformation. Additionally, this treaty would propose that national health strategies incorporate the measures and targets on progressively advancing the right to health including for digital health services. This is particularly important because, as Professor Scott explained, there’s a massive commercialization of the digital space and these sorts of mechanisms would assist in holding third parties to account. It would also propose accountability mechanisms on data ethics and privacy in digital health, in terms of data sets, and stipulate state obligations to make disaggregated data available to identify inequities in access to digital health services and also the underlying determinants. And these mechanisms would expressly apply to digital health technologies and data systems.

Finally, participation is a really important principle underlying the proposed convention. The treaty would establish standards to ensure meaningful participation and inclusive participation in digital health-related policy and decision-making and monitoring. Wider participation would ensure that the digital transformation does not unintentionally discriminate against particular groups and that decisions about digital health investments are made inclusively so that digital health information is made equally available including to populations who may not have access to the relevant technologies while there remains a digital divide.

These ideas are still in fruition. We’re really interested to hear your ideas about how international law can support a rights-based digital health transformation so that the most marginalized groups are not left in the lurch through the digital health transition.

Thank you.