Data for sale: trust, confidence and sharing health data with commercial companies

August 12, 2021

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This article is written by Dr Mackenzie Graham, NCIMI Senior Research Fellow: Imaging and Data Ethics and was originally published on the Journal of Medical Ethics blog.

When the history of the Covid-19 pandemic is eventually written, one of the major themes will likely be the important role of ‘big data’. From early discussions about ‘r-rates’ to daily updates on new cases, hospitalisations, and deaths, to consternation about contact tracing apps, and more recently, rates of vaccination, data has played a huge role in the way we have understood and tried to manage Covid-19.

While the pandemic has brought the increasing digitisation of healthcare into focus for many, the critical role of data in the functioning of the health system is by no means a unique feature of the pandemic. Virtually every encounter we have with the health system generates data. This data may be used to facilitate our care, or for things like healthcare planning or research. In some cases, it may be shared with third parties outside the healthcare system. Regulations like the UK Data Protection Act 2018 govern the legal uses of health data, however, most people have only a vague idea about where their health data goes, and how it is actually used.

In addition to its value for patients and health systems, health data also has significant commercial value. For example, a 2020 report estimated the value of the data controlled by the UK’s National Health Service to be approximately £9.5 billion per year. Accordingly, the UK’s Department for Business, Energy, and Strategy has invested over £85 million in facilitating the development and implementation of technology using healthcare data into clinical care. Developing these technologies will necessitate partnerships between health institutions and commercial companies. Yet many people are apprehensive about the prospects of allowing their health data to be shared for these purposes.

Big data will continue to change the relationship between patients and the health system. While the notion of a physician dedicated solely to the health interests of their patient was always a myth to some degree (insofar as physicians have always had to allocate a limited amount of time and resources), traditional expectations about the private and confidential nature of the relationship between physician and patient are challenged in a world where data seemingly exists to be shared. We must ask ourselves: What does it mean to be a ‘patient’ in a health system increasingly powered by data, where every encounter is not only for our benefit but a chance for healthcare learning?

Part of answering this question is determining who we should trust with our health data, what we should trust them to do with it, and under what conditions. This will depend, at least in part, on the nature of the relationship that exists between us. Yet it can sometimes be difficult to discern trustworthy users of data, from those that are untrustworthy. In fact, in some situations, trust may not be the right attitude to adopt at all.

In my recent paper, I explore one kind of ‘relationship’ that exists within the larger system of health data sharing: the relationship between individuals that are the source of health data, and the commercial companies that seek to use it. Should this relationship be one of trust, and if not, how should we understand it? I argue that trust is not the appropriate attitude to adopt when sharing health data with commercial companies. Instead, we should be willing to share our data when we can do so with confidence: when we can do so within a system that provides assurances of certain outcomes.

As users of the health system, we are generators of health data as well as recipients of care. While the digitisation of healthcare brings promises of better and more efficient care, it also creates new kinds of relationships (e.g., patient and commercial company) and complicates existing ones (e.g., patient and physician). Understanding these relationships, and the reasonable expectations of those involved will be critical to ensuring that big health data delivers on its promises of patient benefit and not merely profit.

Data for sale paper abstract

Powered by ‘big health data’ and enormous gains in computing power, artificial intelligence and related technologies are already changing the healthcare landscape. Harnessing the potential of these technologies will necessitate partnerships between health institutions and commercial companies, particularly as it relates to sharing health data. The need for commercial companies to be trustworthy users of data has been argued to be critical to the success of this endeavour. I argue that this approach is mistaken. Our interactions with commercial companies need not, and should not, be based on trust. Rather, they should be based on confidence. I begin by elucidating the differences between trust, reliability, and confidence, and argue that trust is not the appropriate attitude to adopt when it comes to sharing data with commercial companies. I argue that what we really should want is confidence in a system of data sharing. I then provide an outline of what a confidence-worthy system of data sharing with commercial companies might look like, and conclude with some remarks about the role of trust within this system.

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