Patient Control of Health Record Privacy in the UK
- General Issues
- Scope of Influence
- Start Date
- End Date
- Time Limited or Repeated?
- A single, defined period of time
- Make, influence, or challenge decisions of government and public bodies
- Co-production in form of partnership and/or contract with government and/or public bodies
- Spectrum of Public Participation
- Total Number of Participants
- Open to All or Limited to Some?
- Open to All
- General Types of Methods
- Deliberative and dialogic process
- General Types of Tools/Techniques
- Facilitate dialogue, discussion, and/or deliberation
- Specific Methods, Tools & Techniques
- Citizens' Jury
- Facilitator Training
- Professional Facilitators
- Face-to-Face, Online, or Both
- Types of Interaction Among Participants
- Discussion, Dialogue, or Deliberation
- Information & Learning Resources
- Expert Presentations
- Written Briefing Materials
- Decision Methods
- Opinion Survey
- If Voting
- Preferential Voting
- Communication of Insights & Outcomes
- Public Report
- Traditional Media
- New Media
- Primary Organizer/Manager
- Jefferson Center
- Type of Organizer/Manager
- Non-Governmental Organization
- The Health e-Research Center (HeRC) and the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre.
- Type of Funder
- Non-Governmental Organization
Few approaches have 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 decided to use a Citizens Jury approach to identify what the public thinks.
Problems and Purpose
While there have been many focus groups and surveys examining public opinion of health record privacy, 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.
Background History and Context
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.
Organizing, Supporting, and Funding Entities
The Jefferson Center worked with their UK counterpart, Citizens Jury c.i.c., to conduct the jury. 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.
Participant Recruitment and 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.
Methods and Tools Used
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?”
What Went On: Process, Interaction, and Participation
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.
Influence, Outcomes, and Effects
Over the course of the weekend, many jurors changed their opinion about who should get access to patient records, with more people supporting wider information sharing by the end of the third day.
Of 34 jurors, 33 supported the use of medical record data to improve patient care for the public. With this understanding, the Information Commissioner’s Office can confidently craft policy which reflects the will of informed citizenry.