Dissenting from care.data: an analysis of opt-out forms

Area of Science:

• Health Informatics
• Data Privacy
• Patient Rights

Background:

• NHS England's Care.data programme extracted patient data from GP records for secondary uses.
• This study examined patient opt-out forms available on GP practice websites.

Purpose of the Study:

• To analyze the content and structure of patient opt-out forms for the Care.data programme.
• To identify variations in information provided and requirements for opting out.

Main Methods:

• Theoretical sampling and summative content analysis were employed.
• 100 opt-out forms were systematically reviewed.

Main Results:

• Forms varied significantly in clarity regarding the programme's origin (NHS England mentioned on 54 forms).
• Most forms (81) offered two objection types, but few clarified direct care impact (26) or re-opt-in rights (32).
• Personal data requests were common, including name (99), DOB (94), address (82), and NHS number (33).

Conclusions:

• Variability in opt-out forms may have confused patients, potentially affecting opt-out numbers.
• Standardized, clearly worded information and forms are recommended for future health data-sharing initiatives to ensure patient preferences are met.