Should free-text data in electronic medical records be shared for research? A citizens' jury study in the UK.

ABSTRACT:

Background

Use of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens' jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical policy.

Methods

Eighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and h

SUBMITTER: Ford E 

PROVIDER: S-EPMC7279205 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature