Dame Fiona Caldicott, the National Data Guardian for Health and Care in England, writes about a recent citizens’ jury in which people deliberated on the uses of confidential patient information they feel it is reasonable for citizens to expect.

Introduction

In January 2018, the Office of the National Data Guardian joined forces with Connected Health Cities to run a citizens’ jury. We wanted to understand what patient data sharing scenarios can be ‘reasonably expected’ by the public when they are given the time, support and resources to think this complex matter through.

Dr Mary Tully, Director of Public Engagement for Connected Health Cities, and I have published an article discussing this work. The citizens’ jury report should be read in tandem with this article, as it provides the full context and commentary.

For some time, my panel members and I have been discussing the extent to which implied consent can be used to support data sharing, particularly in the context of new technology and models of care. In 2017, we held two seminars to explore how health and care professionals may share personal data in line with patients’ reasonable expectations. Lawyers, ethicists and health and care professionals came together to discuss approaches to ensuring patient data to support direct care (what UPD refers to as individual care) is shared on an appropriate legal basis. These seminars confirmed that there were challenges around the use of implied consent as a legal basis for sharing data to support care. It was suggested that the legal concept of ‘reasonable expectations’ - a touchstone in the common law of confidentiality over recent years - might help to deal with the challenges to this.

For us, the next logical step was to ask members of the public to apply the ‘reasonable expectations’ test, and so over three days we asked 17 people to consider the uses of data in 10 different scenarios relating to a fictional patient called Anita. The jury followed her through various parts of the health and care system; at each point they were asked if she would have reasonably expected privacy or sharing.

The jury process in brief

The jury was run by Citizens’ Juries c.i.c. and the Jefferson Center, whose selection process ensured a demographically representative cross-section of England’s population: the sample chosen (from 400+ applicants) was controlled for gender, age, ethnicity, and educational attainment. Members heard evidence from six expert witnesses, and a “balancing witness” enabled the jury to hear reasons why it might be reasonable to expect data sharing and to expect privacy. The jurors also participated in smaller group exercises and completed pre and post jury questionnaires to evidence changes in opinion.

The key findings

  • A majority of the jury said data sharing would be reasonably expected in all but one scenario (where Anita’s GP encounters her husband and discusses her case).
     
  • The jurors were very supportive of data sharing with implied consent for routine, direct care scenarios such as: a GP sending referral data to a hospital; a hospital doctor looking at the referral to triage; the patient’s case being discussed by a multi-disciplinary team. The reasons they gave were based on an understanding that better information sharing benefits those receiving care.
     
  • The jury also supported the use of data sharing for altruistic reasons other than direct care, such as developing new tools for health and care or helping with the diagnosis of others, citing the importance of contributing to future research, advancing the knowledge of health professionals, and doing something for the ‘greater good’.
     
  • While still thought to be within reasonable expectations by a majority, two scenarios that created a higher level of discomfort related to administrative tasks performed by non-clinical staff. Jurors were concerned that the information shared with them might be disproportionate to the task; however, they recognised that the handling of patient information by non-clinical staff was necessary to run the system.
     
  • The scenarios in which information was sent to assist the diagnosis of another patient, or to enable a university to develop artificial intelligence software, also had comparatively higher numbers of jurors who at the beginning were either unsure or expected privacy in those scenarios. But when told of the uses and safeguards, a majority were satisfied.

In conclusion

The jury provided further insights into what people expect in relation to data sharing, and which factors are important when it comes to their confidential health information. There were no great surprises – what we heard was consistent with the themes of existing research: that people are generally supportive of data sharing if they feel informed, think it is proportionate, and understand the benefits and safeguards.

The findings did further underline for us the importance of communication and transparency to gaining people’s trust and support. It was notable that, especially when information is being used in ways which go beyond the traditional, the views of jurors changed after they spoke with doctors, researchers, and administrators who use patient data day-to-day.

We would hope that this study proves a useful addition to Understanding Patient Data’s compendium of existing public attitudes research in this area.

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Video produced by Connected Health Cities.