Update to confidentiality and data sharing guidance around HIV

There’s been a recent update to the Guidance on Confidentiality and Data Sharing in Sexual Health, Reproductive Health and HIV Services in England. This means new information and guidance on how patients’ HIV information is kept in different health settings and who has access to it. 

It’s all part of an effort to give everyone a Shared Care Record, meaning local services are able to access a single health record not previously shared between different health and care providers. This change is being rolled out gradually across England in different stages, with locally-adapted approaches, to provide a more joined-up approach as patients move between different parts of the health and care system.

This video explains the issue, and how it’s changing in the East of England.

Young people living with HIV need clarity

The subject of records and confidentiality is one many of the young people we work with want clarity about. They don’t know when they need to mention their HIV in health settings or when doctors or nurses will already know. 

This is why it’s so important health professionals talk to young people living with HIV in their care about this during appointments, including where their HIV information is held on their health records, when they need to tell healthcare providers in another health setting about their HIV, and the opt-out options available to them. 

What’s the difference between a Summary Care Record and a Shared Care Record?

  • Summary Care Record: A limited summary of a patient’s GP medical records, including medicines they take, any allergies and sensitivities. A HIV diagnosis would not be included unless requested by the patient, but as the record lists medication, health care professionals might be able to work out the diagnosis. This record can be requested by other health care providers within NHS organisations, like hospitals, to ensure they provide safe care. Patients can opt out of having a Summary Care Record by submitting a patient consent preference form to their GP.
  • Shared Care Record: These provide a much more detailed record of a person’s health and care, listing current health issues, medication, test results, care or treatment plan details, as well as information on social care or support needs. It can be accessed and added to by health and care professionals from the NHS and beyond, including primary care, community services, mental health services, social care, secondary care, and specialist care. Health and care professionals will need a patient’s explicit consent before adding a HIV diagnosis to this record. Patients can also choose to take their HIV medication off this record, but this isn’t advised as it could have an impact on their care.

New guidance for patients includes details about: 

  • Information held by dedicated sexual health services
  • Information held by the GP, hospital and other organisations that provide care
  • Summary Care Records and Shared Care Records
  • What to do If you don’t want your information shared

There’s also a detailed section for healthcare workers, including for: 

  • If you work in a dedicated sexual health service
  • If you work in another care setting like a GP practice or hospital
  • Patients who do not wish to share their information
  • Public interest disclosures

And another section for Information Governance professionals. Read the full new guidance here.