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Review of public and professional attitudes towards confidentiality of healthcare data

What were the key findings?

The literature review found that:

Professionals are typically more open to the sharing of patient data across a variety of contexts than members of the public.

  • Among both patients and professionals there is enthusiasm about the possible benefits of electronic medical records, however this is tempered by concerns about security and uses of data other than those relating to their direct care.
  • Members of the public often have poor awareness of the ways in which patient information is currently used and who it is available to.
  • Members of the public are generally happier for data to be shared and used for the purpose of helping others or improving healthcare; they are less happy for data to be used commercially.
  • With regards to secondary uses of data, members of the public trust some organisations much more than others. The NHS is highly trusted, while there is low trust in private companies.
  • Concerns about confidentiality are not limited to sharing medical records. Patients are also concerned about breaches of confidentiality during the process of care delivery.
  • Views on what consent process would be appropriate for secondary uses of data are highly context dependent for patients, professionals and members of the public.
  • There is a need for improved professional awareness on existing confidentiality policies and procedures in some settings for example some services that provide healthcare in the criminal justice system.

OPM found that there were very few high quality studies on attitudes to the uses of data in the public interest which appears to be a gap in the evidence base.

Why did we commission this research?

Since 1971 the GMC has published advice on the subject of confidentiality, with discrete guidance on the topic first published in 1995. In 2009 the current guidance was published by the GMC. The 2009 Confidentiality guidance sets out the principles of confidentiality and respect for patients' privacy that doctors are expected to understand and follow.
Since 2009 considerable discussion and debate has taken place with regard to the subject of the confidentiality of data in the UK. Over the next year we will be reviewing our guidance to make sure that it is clear, helpful, and relevant to doctors’ needs.
The literature review was commissioned to inform the development of the updated guidance, alongside other strands of evidence and input that the GMC is gathering, such as consultation with key stakeholders. At the end of this year we will be going to formal consultation on the updated draft confidentiality guidance.

What did the research involve?

The research involved literature searches and snowballing of references from key papers. A range of experts were contacted to ensure that key sources of information were not missed, and to ‘sense check’ the emerging findings to ascertain how these could best be understood.

Full report and executive summary

Full Report (pdf)

Executive Summary (pdf)