This article provides an update on our work looking at horizon scanning and new technologies using patient data.

There is considerable excitement about the application of new and emerging digital technologies in healthcare and research. Many of these, such as machine learning, wearable devices, mobile apps and text mining to name a few, use patient data to develop and hone their functions.

How should we articulate these opportunities in a way that is accessible and meaningful to patients, clinicians and the public? Also, looking ahead, the advances of data science raise profound ethical and social issues that must be addressed if these technologies are to help shape society in a positive, equitable and socially just way. How can we anticipate and think through these issues now as new uses of patient data develop? On 19th June, Understanding Patient Data co-hosted a workshop with the Wellcome Trust to bring together representatives from the health sector, academic research, policymaking, ethics and industry to try and tackle these big questions.

The key aim of the meeting was to get conversations going across sectors. We wanted to understand how people coming from very different perspectives view the opportunities, benefits and challenges of using patient data-driven technologies to improve patient health, care and research. Frequently, these conversations happen in siloes or local bubbles, leading to people talking past one another or duplicating efforts.

Opportunities

The morning session focused on getting participants to think and hear from different sector perspectives, discussing in table groups what the opportunities are for better use of data through technological innovation. We encouraged participants to think big and to identify whether there were overlaps between the way people from different sectors perceived and articulated these opportunities.

This was particularly interesting for the Understanding Patient Data team as we often see real gaps between people’s perceptions of what technology can or should deliver and what makes the most compelling case for different audiences. For example, industry typically emphasises the potential for technology to transform and revolutionise health. This has the inadvertent effect of creating concern among health professionals and patients who want to see improvements but are anxious about the ‘disruptive’ rhetoric of innovation. It was great to see that there was a large degree of consensus among participants about the key opportunities here, all of which contribute towards the overarching aim of improving patient health. These relate broadly to the potential to:

  • increase efficiency, accuracy and effectiveness of health services at organisational, regional, national and international levels;
  • develop more sophisticated and stratified understandings of disease and treatments;
  • enable patients to better self-manage their own health and have control over data about them;
  • foster a research, innovation and improvement culture within healthcare;
  • better understand and plan for future population health needs.

‘Challenges’

The afternoon kicked off with two brilliant presentations that helped participants consider the bigger picture and longer term questions about the role and use of new data-driven technologies. Firstly, Dirk Gorissen (Oxbotica) gave insights into lessons from the development of autonomous vehicles, highlighting unanticipated challenges concerning the way interacting with technology changes people’s behaviours and expectations. This has fascinating implications for the way that clinicians make decisions and for the doctor-patient relationship if automation or machine learning is embedded into clinical decision-making tools.

Mike Parker (University of Oxford) then outlined some of the key ethical and social considerations that new technologies using patient data throw into relief. Ethical issues are often considered to be challenges or barriers to innovation and development, but it is compelling to think of the ethical imperatives in favour of using data when it can be critical in the development of treatments, better diagnoses and ultimately to help drive better health. Beyond just thinking about privacy and consent, wider ethical issues of social justice, equity of access to healthcare and the risks of stigma need to be carefully thought through so that we can collectively create the conditions for justified public trust in data use.

Where from here?

One of the biggest challenges for a meeting like this is to maintain momentum by following up with practical actions and capitalise on useful conversations that have been started. For Understanding Patient Data, the key outcome was to generate interest in a public dialogue we’ll be running with the Academy of Medical Sciences over the late summer, which will explore public, patient and clinician attitudes towards new technologies using data in healthcare – watch this space for more details soon.

We also heard several fantastically useful ideas about enabling data users to try out ideas and explore realistic datasets in a safe ‘sandbox’ environment; and defining the rules of engagement, across the system, for ‘partners’ working with the NHS and using patient data. All of these ideas are steps towards helping to provide clear, comprehensive governance for data use and we’re looking forward to following up these conversations in the weeks to come.