Governing digital health: Beyond ownership and regulation
The conference on ‘Governing Digital Health: beyond ownership and regulation’ took place on 26 April, 2018 at the Graduate Institute of International and Development Studies (IHEID) in Geneva, Switzerland. The meeting focused on the development of a digital health governance framework able to properly address to the political, ethical, economic and security challenges that the use of new technologies in the health sector is posing.
Dr Michaela Told (Deputy and Executive Director, Global Health Centre) opened the discussion by considering that digital health technologies are transforming the delivery of health care, thus posing a complex array of questions. Moreover, applying technological innovation to the health sector is also bringing into the discussion multiple stakeholders (e.g. government ministries, civil society organisations, private providers and patients).
Dr Ernst Hafen (Co-founder and President of the board, MIDATA.coop) considered the individual perspective and analysed individuals’ roles in managing their own data. He first explained that individuals are the maximum point of data aggregation: individuals are at the centre of the ‘data universe’. He pointed out that such a concept is also validated by Article 20 of the Europe Union’s Data Protection Regulation (GDPR), as the data subjects ‘shall have the right to receive the personal data concerning him or her[…]’, hence individuals have a considerable amount of data aggregation and data disaggregation power. He explained that the concept behind MIDATA.coop is a co-operative one: it aims to democratise the personal data economy and thus digital health. In this sense, it will be up to individuals to decide to whom they want to give access to their data, and to what extent they want to participate in data sharing policies. MIDATA.coop basically acts as a fiduciary of its members’ data who can visualise and analyse their personal data. They can actively contribute to medical research and to clinical trials by providing access to sets of their personal data across co-operatives. He concluded by affirming that this opens the door to a new scenario: a government co-operative model which constitutes a concrete alternative to the existing ‘winner-takes-it-all’ model.
Mr Peter Cuipers (Healthcare Partners & Alliances Executive Europe, IBM Switzerland) considered that it is difficult to talk about one specific framework when discussing digital health. This is because digital health involves discussing the IT industry (and its governance) on the one hand and the global health system – and its governance – on the other. He explained that there is one big difficulty inside the digital health governance discourse: the rising number of stakeholders. As more and more technologies can be applied to the delivery of health care, more agents become involved. He concluded his presentation by enumerating two critical elements to be kept under consideration:
Trust: ‘do you trust someone to take care of your data? Do you want to take care of it yourselves? If so, are you literate enough?’, Cuipers puzzled the audience. Digital literacy is a crucial element when considering the concept of ‘patient consent’.
Clarity challenge: although debates around digital health governance have been multiplying in these last year, it is still unclear to which specific challenge we are referring (e.g. access to healthcare, improve existing health care, etc).
Dr Effy Vayena (Professor of Bioethics, ETH Zurich TBC) considered that academia is also a stakeholder in this discussion and has the role of developing a better framework for digital health and proposing new solutions. Although in some contexts, data access is regulated, it is difficult to balance between providing new services and creating new vulnerabilities when digital health is implemented on a larger scale. She specified that the biggest challenge regarding digital health governance is constituted by the lack of an ‘alignment of interest’, and more importantly, by a lack of incentives favouring the alignment of the interests expressed by different stakeholders. She concluded by reaffirming the important role of academia as an agent that can ‘facilitate and promote solutions among different stakeholders’.
Mr Rajiv Kumar Chander (Ambassador Extraordinary and Plenipotentiary Permanent Representative, Permanent Mission of India to the United Nations Office (UNOG) in Geneva) illustrated the Indian government’s policy aiming at leveraging technology and assuring digital coverage in the country. He considered that without looking at ethics and the standards in place ‘it would be difficult to bring solutions to those who need it the most’. So far, in India more than 1.2 billion citizens have been digitally registered in the digital programme launched by the government. The collection of data through this digital platform has important implications when targeting segments of the population with specific medical needs. For example, in case of a disaster scenario, such data would inform authorities and aid organisations about the medical needs of that specific afflicted area (e.g. higher concentration of diabetic or HIV infected patients) and thus plan resources accordingly.