Smart Information Systems and Health

Human Rights and Ethical Instruments

The right to health is provided for in a selection of international laws and policies, ranging from the Sustainable Development Goals, the EU Health Care Agenda, the Charter of Fundamental Rights of the European Union Law as well as the International Covenant on Economic, Social and Cultural Rights and thematic documents on a UN level. These include conventions on the rights of the child, women, disabled persons, migrant workers, whilst the right to health is also provided for in the anti-racist convention. The above list demonstrates that the right to health has been recognised as a right of central importance in the furtherance of sustainable development and constitutes an element of primary European Law and major international instruments.
However, the challenges emanating from SIS (the combination of AI and big data analytics) are multi-fold.  The chapter conducts an extensive discussion on the legal framework.

The Positive Side of SIS and Health

Health and health care are areas which have been positively impacted by SIS as such systems help patients live longer and healthier lives. SIS have also allowed patients to access health care without having to physically leave their home, opening windows of opportunity for, amongst others, persons inhabiting rural and isolated areas and persons with mobility problems.
With the advances in wearable technology, patients can check metrics such as their pulse, oxygen levels and blood pressure, and can upload this data directly to a mobile patient portal accessed by the patient’s doctor. In addition to facilitating access to health care and doctor-patient communication, the regular input and analysis of such data can serve to predict, for example, heart disease risks. As well as the aspect of patient care, embedded sensors in smartphones and applications are increasingly being used in health research, rendering the implementation of large-scale experiments outside the laboratory feasible.
The Negative Side of SIS and Health
Despite the positive aspects of SIS in health, there are ethical and human rights concerns about:
(i) Privacy
Case Study: Google Deep Mind and the Royal Free Trust involved:
A 2016 collaboration between the two above institutions aiming at predicting and preventing acute kidney injuries through an application.
Within this framework, 1.6m patient records were transferred to one of the biggest data mining companies
This is a vivid example of the problems that might arise in the interplay between AI and privacy (in treating personal data) with the transfer of data constituting a flagrant violation of the right to privacy of the patients and a disregard of ethical considerations, two very significant constituents of the right to health.
(ii) The accuracy of smartphone apps and
(iii) unvalidated apps providing inappropriate advice.
The above can lead to misdiagnoses and mistreatment and can negatively affect patients‘ health
Moreover, the use of big data for large-scale experiments draws attention to some fundamental questions namely:  to what extent should big data and remote self-reported health outcomes replace more accurate and validated clinical assessments for use in health research?
SHERPA’s chapter on health discusses all the above, as well as the Google Deep Mind and the Royal Free Trust case for purposes of demonstrating the real-life vulnerabilities of SIS in the ambit of health. Such cases are assessed through ethical and human rights lenses.

Lessons Learned

The potential contribution of AI and SIS to the advancement of healthcare is significant. Medical big data is invaluable for the purposes of biomedical research, public health practice, institutions’ quality assessment and improvement efforts, and post-marketing surveillance of drugs and devices, among other initiatives. However, the dangers involved in both handling
The best way forward would be the drafting of legislation and policy which respects, strengthens and safeguards the established rights on health and which plays specific emphasis on the interrelation between SIS and Health as well as the specific (already manifested but foreseeable also) related threats and dangers.