Patient data is collected under legal permissions granted to the NHS Infectious Diseases in Pregnancy Screening Programme under Regulation 3 of The Health Service (Control of Patient Information) Regulations 2002.
The NHS Infectious Diseases in Pregnancy Screening Programme has permission from Parliament to collect this data without the need to seek consent from individual patients. The service also conforms to the requirements of the Data Protection Act (2018).
ISOSS, as part of the NHS Infectious Diseases in Pregnancy Screening Programme, recognises the benefits of using data for the public interest but also takes its responsibility for protecting confidentiality seriously. All requests for secondary use of data collected by ISOSS undergo a rigorous governance process. Data used for research that involves the use of personal data items require assessment by the NHS Research Ethics Committee. If identifiable data (such as DOB and NHS number) is requested, then additional approvals from the Confidentiality Advisory Group under the Health Research Authority (HRA) will also be required. The Antenatal and Newborn Research Advisory Committee review all requests for data for research projects, evaluations or audit activities. If approved, the Office for Data Release will review the data items requested that are subject to strict confidentiality provisions before data is provided to the applicants.
Patient Objection To Use Of Data For Research Purposes
ISOSS aims to monitor all pregnant women and children who are diagnosed with HIV, hepatitis B, syphilis and congenital rubella, in order to plan and improve healthcare services for future generations.
We collect some personal data items within the ISOSS which includes NHS number and date of birth, but we do not collect names and addresses. Secondary use of data collected by ISOSS is subject to the research governance process detailed above. If you are a pregnant woman with HIV, hepatitis B or syphilis and you object to your personal data being used for research purposes, your record will be flagged on the surveillance database and excluded from any datasets used for research.
Please note that as the ISOSS team carries out surveillance activities for the NHS Infectious Diseases in Pregnancy Screening Programme under Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002, it will not be possible to remove your record from our database. To register your objection, you can let someone in your antenatal or HIV/GUM Team (e.g. the antenatal screening coordinator or your specialist physician), know about your objection and ask them to contact ISOSS on your behalf.
As of 1st October 2021, PHE became the UK Health Security Agency (UKHSA). Most elements of the national screening programmes transferred to NHS England and NHS Improvement (NHSEI), with some functions transferring to the Department of Health and Social Care (DHSC). The ISOSS governance information on this page will be updated in due course.