Patient Control of Health Record Privacy in the UK

Health record data can be collected and used in research to improve treatment, potential causes of diseases, and best medical practices, but these opportunities aren’t without controversy. Many people are concerned with protecting individual privacy, especially in keeping health information confidential. In the UK, the care.data patient record sharing program created by the National Health Services was halted after public opposition regarding the program’s potential for abuse.

While there have been many focus groups and surveys examining public opinion of this issue, few studies gathered a clear understanding of the public’s contrasting priorities when considering privacy and better health outcomes. The Health e-Research Center (HeRC) and the Farr Institute sought an approach that could tell decisionmakers what members of the public thought about the issue once they gained a deeper understanding, and decided to conduct a Citizens Jury.

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Partners & Funders

The Jury was commissioned by the Health e-Research Center (HeRC) and the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre. Project partners included the Information Commissioner’s Office, the Farr Institute of Health Informatics Research, and the Health Research Authority. Funding was provided by the Medical Research Council and the National Health Service National Institute for Health Research. We worked with our UK counterpart, Citizens Jury c.i.c., to conduct the jury.

Participant Selection

Jurors were recruited through various methods around the Greater Manchester area, including outreach to a community choir, a presentation at a retirement community, a university research volunteer website, and a local job opportunities website. The 34 people selected to participate were recruited to represent a sample of English residents based on the 2011 census, in regards to gender, age, ethnicity, and level of education. Jurors were paid £400 for participating in three days of the jury.

Our Approach

The two-part Citizen Jury series took place over the course of two weekends in January 2016, with a different selection of 17 jurors attending each three-day jury. At each event, citizens had the chance to hear from and ask questions of expert witnesses on health and data privacy. They identified, discussed, and ranked reasons for and against two main questions, “Should the NHS body be allowed to create these records about you and other patients?” and “Given your answer to question 1, who should be allowed to access and extract data from the records created?”

Deliberation

Each group started their first day with a simulation exercise to get familiar with the deliberation process. Next, they listened to presentations on patient records, current data and health privacy laws, ethical considerations, an argument for using patient records in the public interest, and an argument for protection and patient control of records. After each presentation, the jurors had the chance to ask questions and identify key learning points. They then worked together to identify, discuss, and rank reasons for or against the first question, “Should the NHS body be allowed to create these records about you and other patients?” Participants then voted individually on their personal responses to the question.

On the final day, the groups worked together to develop the case for and against different parties having access to patient records, in response to question 2, “Who should be allowed to access and extract data from the records created?” The jury then voted individually on their responses to question 2.