This primer is a summary of policy development and global-level discussions around digital transformation and New Digital Technologies (NDT). It intends to help the reader catch up with these developments in order to be able to meaningfully contribute to the global conversation around digital transformation in global health.
What Does Digital Transformation Mean?
Digital transformation is an umbrella term first used in the private sector. It refers to the changes industries and businesses undertake when moving from pen and paper, physical operations to digital systems. It is a process that has unfolded all around us in the past decade, but has taken different forms in different places, whether it was the rise of rideshare apps like Uber, being able to pay for your meal with your phone using a QR-code and an app like M-PaiSA, have a video-call with your doctor or get sent lab-results through email.
Digital transformation refers not only to the replacement of older technologies by digital ones, but also to progress and change within digital technologies. Most of us have seen how quickly digital tools can evolve. Not so long ago, safely buying songs or movies online was new and exciting, but before we had time to get used to it, the era of buying media online had ended. Nowadays, for a monthly fee equivalent to what a single movie or music album used to cost, we have access to vast catalogues of entertainment to stream directly into our phones or computers.
When applied to health policy, the term digital health is used by many institutions in lieu of digital transformation. WHO for example used the following definition in its 2019 Strategy on Digital Health:
In the context of this global strategy, digital health is understood to mean “the field of knowledge and practice associated with the development and use of digital technologies to improve health.”
The role of New Digital Technologies (NDT) in health became an important conversation in the last few years; it is what we proposed to discuss at our GFAN Global Strategy Meeting in 2020. In 2018, the World Health Assembly’s resolution 71.7 requested the Director-General to provide normative guidance on digital health, including “through the promotion of evidence-based digital health interventions”. In early 2019, as a response to that request, the WHO started to develop its Global Strategy 2020 – 2025, which contains guiding principles, strategic objectives and framework for action to encourage the adoption of digital technologies in health while mitigating any harmful side effects.
Many have pointed out the potential of NDTs to radically transform health. Opportunities range from simple improvements, like replacing pen and paper drug orders with digital spreadsheets to provide real-time data and avoid shortages, to cutting edge ideas such as the use of artificial intelligence to identify epidemiological patterns or new drugs. Despite the promises of using NDTs to transform health, the digital transformation has been slower in this sector than in others – the fact that it took until 2019 for WHO to produce guidelines on the issue in part reflects that slow adoption. COVID-19 changed that situation. Governments started to adopt containment measures limiting their citizens’ mobility, and encouraged in parallel the use of NDTs to try to ensure continuous access to health services. The pandemic also put medical supply chains under tremendous pressure, accelerating the adoption of back end digital tools to improve resilience and efficiency.
Whether this rapid rate of transformation will be maintained remains to be seen, but there is little question that digital transformation is coming to the health sector. When planned and supported with the right resources, digital transformation can strengthen weak health systems relatively quickly and at a low cost; as illustrated for example in the list of recommendation to the G20 Health Minister’s meeting by Transform Health. There are grounds for optimism. However, digital transformation also comes with the potential to worsen inequalities, further embed stigma and discrimination, and systematize human rights violations. These risks are especially stark for historically marginalized groups.
Global Health Institutions and Risks Related to NDTs
Global health agencies, such as the World Health Organization and the Global Fund to Fight AIDS, TB and Malaria, have not set up processes to assess the human rights risks of digital transformation, nor have they agreed on common standards, framework or definitions. This is a salient issue, since for all its promises, the digital transformation carries real risks, especially when applied to an issue as sensitive as health:
- Right to privacy – The UN Special Rapporteur on the Right to Freedom of Opinion and Expression has highlighted the systematic use of technologies to violate privacy rights. The COVID-19 response has intensified these concerns, as some governments have used pandemic response to expand systems of surveillance that can easily be repurposed. This was recently illustrated by the Singaporean government’s quiet shift to allow police to access data from its COVID-19 contact tracing app – data the state had previously pledged to protect. Concerns over the use of private health data did not start with COVID-19; Grindr was widely criticized in 2018 for sharing unencrypted user-data with third-parties, including in some cases HIV-status. In addition, the digital storage of patient data opens creates new risks, including remote-access and leaking of large databases.
- Right to security of the person – The increasing reliance of health facilities on digital systems also creates security risks. Healthcare providers can see their services severely disrupted by malware attacks; a situation made worse by the pandemic and the pressure it put on hospitals to be efficient.
- Public-private partnerships – Shoshana Zuboff shows in her 2019 book Surveillance Capitalism how tech giants such as Facebook and Google have turned data extraction and exploitation into a source of profit. Today, private companies of all sizes race to create big datasets that they can either sell for profit or use to train artificial intelligence systems. Wealthy countries, because of public pressure, increasingly try to protect their citizens against these companies. In the EU for example strict restrictions are imposed by the European General Data Protection Regulation. Hence companies with data-dependent business models turn to low-resource settings for data-extraction opportunities, a form of “data colonialism.”
- Right to Non-discrimination – A lot of modern AI systems need to be trained on datasets in order to fulfill their role. Many of these datasets are not purpose-built to train AI, and are instead operational datasets created by administrations or companies for various purposes. One issue with using such real-life datasets as the basis for AI training is that AI-supported systems will tend to reproduce biases found in these datasets, leading to discriminatory outcomes. This issue was popularized by Cathy O’Niel in her 2016 book, Weapons of Math Destruction, and was since referenced by Michelle Bachelet, UN High Commissioner for Human Rights, in a 2019 keynote speech on the right to privacy in the digital age.
Questions and Avenues of Engagement For Civil Society Actors
As Global Fund advocates, what role do we see for the Global Fund in its more political role as a trusted actor to advance some of these concerns and ensure that digital health transformation is equitable and rights-based?
Is the Global Fund doing enough within current programs to advance and support the positive uses of digital technologies or are there areas for improvement?
Some of the risks related to NDT and digital transformation are inherited from issues in our non-digital environment long documented by rights advocates – marginalization of certain groups, non-democratic political institutions, profit-driven decision making by private actors, etc. Digital transformation also creates opportunities to remedy these issues, and advocates can and should play a decisive role in identifying these remedies and pushing for their adoption.
Civil society actors have a role to play beyond influencing the application and the beneficiaries of NDTs. Just as we fight to be involved not only in program implementation but also in program design and evaluation, we need to find or create spaces to be able to shape what technologies are being developed, what tools are invented and what path takes innovation. Consumer technologies were often developed by innovators who had experienced first-hand the needs & demands they were trying to address; when it comes to human rights and health policy, we have essential expertise that we need to share.
Some reading we have found useful:
Sara L. M. Davis, Kenechukwu Esom, Rico Gustav, Allan Maleche, and Mike Podmore, 2020: A Democracy Deficit in Digital Health?
Transform Health Coalition, 2021: G20 2021 Asks
I-DAIR, September 2020, Digital Health as an enabler of human rights
Special Section on Big Data, Technology, Artificial Intelligence and the Right to Health, in the Health and Human Rights Journal, December 2020