Exploring patient and public attitudes towards medical confidentiality

What were the key findings?

  • For direct care uses and disclosure, participants were comfortable with implied consent when sharing relevant information within the health care team, though some were less comfortable with administrative staff, receptionists and social workers having access to medical information.

  • Participants’ views on the conditions that need to be met when relying on implied consent reflect those set out in the draft guidance.

  • There was strong agreement with the draft guidance on sharing information with family and friends. Participants felt it was important to listen to friends and family members’ concerns, but not disclose information without prior consent to do so.

  • Participants agreed that doctors would need to share information, if it was in the patient’s best interest, if the patient lacks capacity to consent. If a patient has capacity, participants were more split.

  • There was consensus that it is a doctor’s responsibility to make sure patient information remains secure.

  • For indirect care uses and disclosure participants were comfortable with their information being shared provided the data was anonymised or de-identified – this was an absolute requirement. They recognised the benefits of sharing information for this purpose and there was an expectation this was already happening.

  • For non-care uses and disclosure to third parties such as employers and insurers, participants felt doctors should offer to show reports to patients first to allow them to check for factual inaccuracies.

  • It was felt that a doctor’s responsibility to protect the public, other patients or colleagues would sometimes justify a breach in patient confidentiality.

  • Overall, there was a strong level of agreement with the principles outlined in the draft Confidentiality guidance.

Why did we commission this research?

The aim of the research was to understand if patients and the general public agree or disagree with the underlying principles in the draft Confidentiality guidance. The research focused specifically on a number of groups who may be less likely to engage in the wider consultation or may have specific issues around patient confidentiality and the sharing of information.

What did the research involve?

The research was qualitative and designed to provide in-depth insights rather than statistically representative results. It involved a series of discussion groups and in-depth interviews, using fictional case studies to stimulate discussion.

Full report and appendices

Exploring patient and public attitudes towards medical confidentiality – full report

Appendix A – Confidentiality draft guidance

Appendix B – long questionnaire

Appendix B – short doctor questionnaire

Appendix B – short patient questionnaire

Appendix B – explanatory statements