Guidance

HIV surveillance systems

Public Health England (PHE) uses a number of surveillance systems to collect HIV data.

HIV and AIDS reporting system (HARS)

The HARS dataset was developed by Public Health England (PHE) in conjunction with Department of Health and the National Reference Group for HIV.

HARS will replace survey of prevalent HIV infections diagnosed (SOPHID) and HIV & AIDS new diagnoses database (HANDD) in 2014 and 2015.

The new HARS dataset is designed to:

  • reduce the reporting burden for reporting sites
  • increase the efficiency of HIV surveillance
  • enhance standard HIV surveillance outputs
  • produce quality of care indicators
  • directly support commissioning services

HARS dataset

The dataset is based on the NHS data model and dictionary (to ensure data are consistently reported across the NHS) and will flow via an XML schema. XML is a compulsory component of all new NHS datasets and ensures the correct formatting of all data items in the file This improves data quality.

Upload and validation

Like previous standards, the dataset will be submitted to PHE’s secure HIV and STI Web Portal. Upon arrival, the HARS return will undergo a 2 stage validation process:

Stage 1: verification against XML schema

The uploaded file is verified against the HARS XML schema and any formatting issues or missing mandatory variables are identified and a list of areas for review is made available to the user.

Stage 2: PHE validations

Once the file passes the XML verification stage, it is validated against PHE validation rules, see appendix 3 in the HIV and AIDS Reporting System (HARS): technical and behavioural manual (PDF, 886KB, 41 pages) for more information.

Currently users should upload their HARS file to the web portal as a HARS submission. The 2 stage validation process will be performed and feedback will be sent by PHE to the user. A system is being developed to enable users to upload their data and receive an automated feedback message.

HARS resources

HIV and AIDS Reporting System (HARS): data dictionary

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HIV and AIDS Reporting System (HARS): technical and behavioural manual

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HIV and AIDS Reporting System (HARS): site codes

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Information standards notification

HARS has obtained information standards notification

HARS frequently asked questions

What should reporting sites be doing in preparation for HARS?

The majority of clinics now have HARS software installed. You should familiarise yourself with the HARS dataset and work with HIV commissioners and software developers to ensure the data collected routinely at your clinic can be incorporated into HARS via an XML schema.

Clinics should also work with software developers to ensure data collection systems are ready to be upgraded; this will facilitate a smooth transfer to HARS.

We are encouraging test files to be submitted to PHE as these identify reporting and data quality issues that can be resolved at an early stage. These test files are solely for the purpose of testing and improving data quality and will not affect commissioning or national outputs.

An outline of HARS implementation milestones is available to download.

When does HARS have to be submitted?

HARS is being rolled out gradually with the intention that all sites in the country will have migrated their HIV reporting to HARS and have submitted a first return by April 2015.

I am having problems recording data on my system, what should I do?

These queries should be directed to your software provider in the first instance, however please let us know and we can raise concerns with the software developer to help facilitate a resolution.

If there are uncertainties regarding the coding of a particular field that are not addressed in the HARS technical and behavioural manual, contact harsqueries@phe.gov.uk.

If you require a communications proforma to facilitate logging and resolving concerns raised with your software developer, please contact harsqueries@phe.gov.uk.

Can I submit HARS data via Excel or paper forms?

HARS must be submitted in XML format to comply with the ISN. If you cannot submit in XML format contact harsqueries@phe.gov.uk.

Will I have to submit to HARS in addition to SOPHID and HANDD?

If you currently submit to both SOPHID and the new HIV diagnoses database then when you begin submitting HARS, you will no longer be required to submit to the SOPHID. We are asking providers to continue new HIV diagnoses reporting in parallel with HARS initially in order to determine if these diagnoses are also being captured in HARS. Once the new HIV diagnoses have been validated against HARS then we can make a decision as to when to stop the new HIV diagnoses reporting.

If you adopt HARS mid-way through a year, a SOPHID return will be required for the period between the last SOPHID return and the point at which HARS begins. This is to ensure full reporting of HIV patients receiving care.

If you only submit to the new HIV diagnoses database, then you should continue with these reports - see the question below.

Will I have to submit HARS for previous years?

No. Once you have switched to submitting the HARS dataset, collection will be prospective only.

What patient identifiable information (PII) are collected?

The HARS dataset collects limited patient identifiers; this enables PHE to identify patients accessing care at more than one clinic, ensuring the correct numbers of patients are counted. The PII to be collected in HARS are as follows:

  • initial (of first name)

  • soundex (scramble of surname)

  • gender

  • patient ID
  • lower super output area of residence (LSOA)

These fields are currently collected through SOPHID and the new HIV Diagnoses database. There are no additional PII to be collected through HARS.

What about Wales and Northern Ireland?

Information from Wales and Northern Ireland will continue to be collected through SOPHID and new HIV Diagnoses, AIDS and Deaths. In the future, it is possible that HARS may be rolled out to these countries.

What about settings outside of HIV outpatient care?

At present we are focusing upon implementing HARS within HIV outpatient settings. In the future, we may produce a cut down of the dataset to enable other settings to submit HARS data. At present, settings outside of HIV outpatient care, including laboratories, should continue to submit their data through new HIV Diagnoses, AIDS and Deaths.

For further information and queries, contact harsqueries@phe.gov.uk.

Survey of prevalent HIV infections diagnosed (SOPHID)

Public Health England collects information from all those living with a diagnosed HIV infection and accessing care at NHS services in England, Wales and Northern Ireland. SOPHID data is used to plan services, monitor the quality of care received by patients and their clinical outcomes.

Survey of prevalent HIV infections diagnosed (SOPHID): metadata files

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HIV & AIDS new diagnoses database (HANDD)

HANDD reports new HIV diagnoses, AIDS and deaths received from clinicians and microbiologists. Data contribute to understanding of HIV transmission and monitor exposure to HIV.

HIV & AIDS new diagnoses database (HANDD): metadata files

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Recent infection testing algorithm (RITA)

The RITA programme monitors the number of patients who recently acquired HIV infection at the time of diagnosis. Data is used to help understand trends in HIV transmission.

Recent infection testing algorithm (RITA): metadata files

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CD4 surveillance scheme

CD4 data is used to model and provide estimates of CD4 decline among drug naïve HIV diagnosed persons who have a known HIV seroconversion date.

CD4 surveillance scheme: metadata files

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CD4 surveillance scheme: longitudinal analysis of the trajectories of CD4 cell counts

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