By Mark Sheehan.

Our paper, ‘Trust, trustworthiness, and sharing patient data for research’ represents the outcome of a distinctive co-production method for doing applied philosophical work in bioethics. The paper is jointly authored by eight members of the public and two academic bioethicists (both with a background in philosophy) and emerges from a novel approach to conceptual analysis undertaken jointly by these ten participants.

We advertised for members of the public who were interested in ethical issues around trust and data sharing for research in the health system. We met for three days over two weekends with the first day featuring talks by and discussion with two senior clinician-researchers who work with patient data, two informaticians responsible for managing the data and data facilities, and the local Caldicott Guardian. The first half of the second day involved an introduction to philosophical work on trust with the remaining day and a half on discussion and development of ideas. At the end of the second day, we produced and circulated a set of key points that formed the basis of the work done on the final day. In what follows I outline some of the influences and considerations that went into this approach and how it is distinctive.

Philosophers have done a good deal of work on trust and trustworthiness – and have made some good progress. However, this progress has not filtered out into the broader discussion (both academic and popular) and has, for the most part, not been applied in specific contexts. Onora O’Neill’s work is one notable exception. The thought behind the meeting was that by understanding the rules, regulations and processes in the local NHS context, as well as the ways in which philosophers have understood ‘trust’ and ‘trustworthiness’, we would be in a position to develop new ideas about the way in which we should think about trust and trustworthiness in the context of medical research on patient medical records.

One of the key kinds of approaches that we might have taken would have been to utilise deliberative democratic methods. These approaches have been widely used in a range of contexts to establish policy or governance arrangements. These methods primarily function by an appeal to the legitimacy of the process in a particular political context. Strict deliberative democratic methods were not appropriate for this meeting because there was no obvious practical, defined question around which a deliberative process could be constructed, and a question answered.

Here, the context was one in which (i) there is relatively settled regulation, governance frameworks and national policy guidance and (ii) there are already numerous practical, publicly engaged policy initiatives in this area that have a much broader reach and scope in terms of influencing political change. There was however a clear conceptual issue that was well suited to reflection and consideration in context, namely, ‘trust’ and ‘trustworthiness’ – this, we determined, was well suited to our interests and approach.

The idea of making conceptual progress in context might also lead this process to be interpreted as a methodological species of empirical ethics, which broadly seeks to connect practical ethical analysis with social scientific methods to explicate attitudes or experiences in specific contexts. But, here, the rationale for co-producing a position on trust was not motivated, as is typically the case in empirical ethics approaches, on the grounds of the practical position or stake of those who are engaged with in a methodological process by the academic ethicists with the purpose of refining practical ethical arguments.

From a different standpoint, a good deal of academic bioethics is now co-authored and there is a wealth of experience about how to successfully go about co-producing bioethics research. Two obvious reasons for gathering a group to co-author are (i) to bring together a range of different disciplines, expertise, and experience to examine a particular issue or (ii) to bring together a group of people who have a similar view or perspective on a particular issue. Given that the call to participate in the meeting was open, the rationale for this group wasn’t similarity of perspective, nor was it driven by a requirement to broaden expertise.

Rather, the rationale for – and the value of – our approach is connected to three distinctive features of the practical ethical issue of interest to us: (1) the specific nature of the problem, (2) the potential for a novel independent perspective and (3) its particular relevance for the shape of public discussion. First, there is a distinct advantage to stepping back from a concentration on expressing our views about what we trust and what we do not, to focus on clarifying what trust and trustworthiness might look like in this setting. This is a move to conceptual work on the nature of trust and trustworthiness.

Second, bringing together a group of people with, in an important sense, non-specialist experience of both trust and the NHS and who would, in all likelihood have very different views about them seemed likely to give rise to distinctive questions and understandings that might otherwise be absent from traditional approaches to undertaking conceptual analysis. As it turned out, this group brought an openness and freshness to the application of conceptual work to this context. And finally, this broader perspective – one which focuses on what rightly counts as trust rather than whether we trust – can be productive and harmonising. In times when we are constantly confronted by what others think and feel, promoting, in a small way, a shared enterprise of understanding, rather than the mere documenting of opinion, is an important component of bioethical work that is firmly situated within a public and practical context.

Acknowledgement: I would like to thank Dr Michael Dunn for very helpful comments and suggestions on the draft of this blog post.

Paper title: Trust, trustworthiness, and sharing patient data for research

Authors: Mark Sheehan [1], Phoebe Friesen [2], Adrian Balmer [3], Corina Cheeks [3], Sara Davidson [3], James Devereux [3], Douglas Findlay [3], Katharine Keats-Rohan [3], Rob Lawrence [3], Kamran Shafiq [4]

Affiliations:

1. Oxford NIHR Biomedical Research Centre and the Ethox Centre, University of Oxford, Oxford.
2. UK Biomedical Ethics Unit, Social Studies of Medicine, McGill University, Montreal, Quebec, Canada
3. Oxford, UK
4. London, UK

Competing interests: None declared

Social media accounts of post author: @mark_sheehan_ox