To what extent should patients control access to patient records for research? A trial by citizens’ jury

Research output: Contribution to journalArticle

  • External authors:
  • Kyle Bozentko
  • Sarah Clement
  • Amanda Hunn
  • Ruth Norris
  • Malcolm Oswald

Abstract

Background. The secondary use of health data for research raises complex questions of privacy and governance. Such questions are ill-suited to opinion polling where citizens must choose quickly between multiple-choice answers based on little information.

Objectives. This project aims to extend knowledge about what control informed citizens would seek over the use of health records for research after participating in a deliberative process, using "citizens’ juries".

Methods. Two three-day citizens’ juries, of 17 citizens each, were convened to reflect UK national demographics, from 355 eligible applicants. Each jury addressed the mission “To what extent should patients control access to patient records for secondary use?”. Jurors heard from and questioned five expert witnesses (chosen either to inform the jury, or to argue for and against the secondary use of data), interspersed with structured opportunities to deliberate amongst themselves including discussion, and role-play. Jurors voted on a series of questions associated with the jury mission, giving their rationale. Individual views were polled using questionnaires at the beginning and end of the process.

Results. At the end of the process, 33 out of 34 jurors voted in support of the secondary use of data for research, with 24 wanting individuals to be able to opt-out, 6 favouring opt-in and 3 voting that all records should be available without any consent process. When considering who should get access to data, both juries had very similar rationales. Both thought that public benefit was a key justification for access. Jury 1 was more strongly supportive of sharing patient records for public benefit, whilst Jury 2 was more cautious and sought to give patients more control. Many jurors changed their opinion about who should get access to health records: 17 people became more willing to support wider information sharing of health data for public benefit, whereas two people moved towards more patient control over patient records.

Conclusion. The findings highlight that, when informed of both risks and opportunities associated with data sharing, citizens believe an individual’s right to privacy should not prevent research that can benefit the general public. The juries also concluded that patients should be notified of any such scheme and have the right to ‘opt-out’ if they so choose. Many jurors changed their minds about this complex policy question when they became more informed. Many, but not all, jurors became less sceptical about health data sharing as they became better informed of its benefits and risks.

Bibliographical metadata

Original languageEnglish
JournalJournal of Medical Internet Research
StateAccepted/In press - 17 Nov 2017