Guidance

Infectious diseases in pregnancy screening programme: ISOSS

Published 26 November 2019

Data analysed through the Integrated Screening Outcomes Surveillance Service (ISOSS) allows Public Health England (PHE) to assess the impact of the infectious diseases in pregnancy screening (IDPS) programme on:

• prevention of vertically acquired HIV, hepatitis B and syphilis
• protecting the health of women with HIV, hepatitis B and syphilis during and after pregnancy
• protecting the health of any children born to women with HIV, hepatitis B and syphilis
• protecting the health of infants and children diagnosed with HIV, hepatitis B, syphilis and congenital rubella syndrome

PHE is building on existing projects and audits that include:

• the National Surveillance of HIV in Pregnancy and Childhood
• audit of perinatal HIV in children born in the UK 2006 to 2013
• surveillance of antenatal syphilis screening (SASS) study: an assessment of UK syphilis screen-positive pregnancies 2010 to 2011
• national hepatitis B in pregnancy audit 2014

Centralising this collection will help the screening programme meet the national requirements for high quality public health disease surveillance.

By collecting data on a national level, ISOSS can assess vertical transmission rates on a larger scale. Audits can be completed, trends can be analysed and common complicating issues in care can be identified.

This leads to recommendations being made locally and nationally, strengthening policy and practice, and improving care for mothers and their children.

1. ISOSS team

The ISOSS team, based at UCL Great Ormond Street Institute of Child Health (GOS ICH), is commissioned to provide the service. The team has experience running the National Surveillance of HIV in Pregnancy and Childhood (NSHPC).

The ISOSS data collection will use established NSHPC methodologies and processes. The service collects data onto a single secure data management tool.

ISOSS team contact and data notification details are available online. Alternatively, you can email the team.

2. Information governance and data protection

PHE has permission from Parliament to collect this data without the need to seek consent from individual patients.

Patient data is collected under legal permissions granted to PHE under regulation 3 of the Health Service (Control of Patient Information) Regulations 2002.

The service also conforms to the requirements of the Data Protection Act (2018).

For any queries or further information about information governance and data protection please get in touch with the PHE Screening helpdesk.

3. How PHE uses ISOSS data

We use aggregated anonymised data to:

• inform data reports for audit and service evaluation
• provide regional breakdowns on response rates and specific metrics
• provide data to support the screening quality assurance service (SQAS)
• contribute to a PHE annual report on HIV and sexually transmitted infections (STIs)
• produce an annual screening outcomes report for the IDPS
• collaborate with PHE colleagues on papers and conference abstracts by mutual agreement
• develop aspects of the data collection forms to address new surveillance priorities as they emerge
• respond to specific requests from PHE to assist with responses to parliamentary questions, and data for international surveillance returns

4. Data sharing

Data protection is an important priority for ISOSS and the service does not share patient-identifiable information unless specific data sharing agreements are in place. Where data is shared, for example with NHS Digital, minimal identifiers will be included.

The IDPS programme manager and screening data lead will need to approve all requests for anonymised aggregated ISOSS data for potential research purposes. Contact the PHE Screening helpdesk to make a request.

The antenatal and newborn (ANNB) screening research advisory committee (RAC) will review research requests.

5. Contributions to national and international monitoring and reports

ISOSS contributes to other national and international public health surveillance services to add to wider global intelligence on infectious diseases. These services include the:

• European Centre for Disease Prevention and Control (ECDC)
• World Health Organisation (WHO)
• Antiretroviral Pregnancy Registry (APR)
• European Pregnancy and Paediatric HIV Cohort Collaboration (EPPICC)
• Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK)
• Collaborative HIV Paediatric Study (CHIPS)
• PHE National Infection Service (NIS) HIV and STI teams

6. Data confidentiality and security

Surveillance is carried out by the ISOSS team – a specialist group of staff who work within a secure site at GOS ICH. More information is available on the information services pages of the UCL website. ISOSS data management and analysis is only carried out by the ISOSS team.

Data is collected, managed and stored in a secure environment (ISO 27001 accredited).

7. Women who do not want their data used for research purposes

A health care professional can contact the ISOSS team if a pregnant woman with HIV, hepatitis B or syphilis objects to their personal data being used for research purposes. The ISOSS team will flag the record on the study database to exclude the data from analyses carried out for research purposes.

ISOSS carries out surveillance activities for PHE under regulation 3 of the Health Service (Control of Patient Information). It will not be possible to remove the record from the database.

8. Engaging patients, clinicians, charities and public

We regularly engage with patient representatives, clinicians and charities to explain what we do and why we need patient identifiable data. We seek their advice and support on how we can improve the screening programme and surveillance of screen-positive women and their babies.