In this piece we outline the main discussions and measures we need to see being systematically adopted to inform decision-making about digital solutions in the health sector, and provide examples of where these were not integrated in decision-making processes and with what consequences.
Developments in digital technologies can contribute towards improving healthcare and realising the right to health, but they also raise concerns about privacy, security and data protection, and more widely about dignity, non-discrimination, and equality. In this evolving data intensive landscape, governments and industry may find opportunities in the health sector to exercise power over individuals through surveillance, exploitation, profiteering, market domination, and control.
PI has documented several such efforts by private companies to obtain and monetise health data, such as menstruation apps, mental health websites, companies selling diet programmes, and responses during the Covid-19 pandemic. At a time when health data is increasingly attributed to commercial value, the digital systems that collect and process this data should be scrutinised from a rights-based perspective. Without careful consideration of the impact and the risks, the promised benefits of innovation may end up creating more harm than good.
Here we provide an overview of the right to health and its place in the digitisation of the healthcare sector. We begin with an outline of the key principles of the right to health and how to uphold a human rights-based approach to digital healthcare. We then examine the digitisation of the health sector and the risks it poses to the right to privacy, data protection and freedom from discrimination.
Everyone has the right to the enjoyment of the highest attainable standard of physical and mental health. This is enshrined in several international treaties, first in the 1946 Constitution of the World Health Organisation (WHO) and further included in Article 25 of the Universal Declaration of Human Rights; Article 12 of the International Covenant on Economic, Social and Cultural Rights; Article 24 of the Convention on the Rights of the Child; Article 12 of the Convention on the Elimination of All Forms of Discrimination Against Women; and Article 25 of the Convention on the Rights of Persons with Disabilities.
The right to health has four “interrelated and essential elements” which provide a framework through which to understand and navigate how all healthcare provisions – including digital ones – ought to be designed and implemented. The Committee on Economic and Social Cultural Rights ‘General Comment 14’ outlines the core components of the right to health:
The Office of the UN High Commissioner for Human Rights and WHO also provide a list of core principles underpinning the right to health, including:
In its Global Strategy on Digital Health (2020-2025), the WHO emphasised that digital health should be developed according to a set of principles including “transparency, accessibility, scalability, replicability, interoperability, privacy, security and confidentiality”. These principles must inform decisions made around the development of health initiatives, particularly digital initiatives that pose risks for patients and challenges for governance, “including data privacy and sharing and ensuring safety and protection of individuals within the digital health environment”. Strong legal and regulatory bases must be established to protect the “privacy, confidentiality, integrity and availability of data and the processing of personal health data”.
Under such international law and guidance, States must take steps to fully realise the right to health both through government action (such as the provision of services and adoption of legislation) and through regulating the private sector.