HARS Technical and behavioural manual for clinic staff

Technical and behavioural guidance – v13
Public Health England - Colindale
HARS
The HIV and AIDS Reporting System
Technical and behavioural manual
for clinic staff
Authors
:
Cuong Chau, Alison Brown, Valerie
Delpech
Revision date
:
01/04/2014
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Technical and behavioural guidance – v13
Contents
1
Document control .................................................................................. 3
2
Background ........................................................................................... 5
3
Scope ..................................................................................................... 6
4
Collection and recording guidance ........................................................ 7
General points ....................................................................................... 8
Service information ............................................................................... 9
HIV clinic attendance information ........................................................ 9
Demographic information ................................................................... 10
Diagnosis information ......................................................................... 11
Treatment information......................................................................... 14
Clinical information ............................................................................ 15
Death ................................................................................................... 15
5
Reporting and transmitting data to PHE ............................................. 17
Description .......................................................................................... 17
Running extracts .................................................................................. 17
Extract format ...................................................................................... 17
Reporting time period.......................................................................... 17
Frequency of reporting ........................................................................ 17
Transmission of the data extract to PHE ............................................. 17
6
How PHE uses the data ....................................................................... 18
Purpose of the HARS return................................................................ 18
Types of output.................................................................................... 18
Reporting time period.......................................................................... 18
Frequency of reporting ........................................................................ 18
Presentation of local area data ............................................................. 18
7
Confidentiality and anonymity ............................................................ 19
8
Contact information for support and guidance .................................... 21
Appendix 1: Data items collected on the HARS return .................................. 22
Appendix 2: Summary of format and available coding options for data
items collected on the HARS return .................................................... 24
Appendix 3 - HARS Validation Rules ............................................................ 29
Appendix 4 – Country coding (relates to country of birth and country of
infection) ............................................................................................. 35
Appendix 5 – ARV coding .............................................................................. 40
Appendix 6 – AIDS coding ............................................................................. 41
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1
Document control
Document
control topic
Current
version
Details
Document intended to provide guidance to front line staff
responsible for capturing and entering HARS data onto
systems and reporting to PHE.
Draft
Author name
Section amended/
Date
added
amended
Cuong Chau
All
06/01/2012
Alison Brown
All
24/06/2012
Current status
Authors
Alison Brown
Alison Brown
Cuong Chau
Cuong Chau
Cuong Chau
Cuong Chau
Cuong Chau
Reviewers
Issued to
Cuong Chau
Reviewer name
All
All
Validation rules
All
All
All
Collection and
recording guidance,
Appendix 1, 2, 3, 4
and 5
Appendix 2
Section reviewed
Peter Kirwan
Peter Kirwan
Melvina Owusu
All
All
All
Person(s) issued to
07/08/2012
22/08/2012
29/08/2012
03/12/2012
31/01/2013
06/11/2013
31/03/2014
01/04/2014
Date
reviewed
11/09/2013
08/10/2013
31/03/2014
Date issued
File reference
THIS DOCUMENT IS VALID ONLY WHEN VIEWED VIA THE INTERNET. IF IT
IS PRINTED INTO HARD COPY OR SAVED TO ANOTHER LOCATION, YOU
MUST CHECK THAT THE VERSION NUMBER ON YOUR COPY MATCHES
THAT OF THE ONE ONLINE. PRINTED DOCUMENTS ARE UNCONTROLLED
COPIES
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Summary of changes to this version:













4.12 – XML output should not contain a field if no data is available
4.16 – Prev_HIV_site corrected guidance
4.17 – Ref_to Org updated guidance
4.30 – Country of birth and infection code for "Not reported" and "Unknown" updated
4.46 – TRI result updated guidance for coding
4.54 – ARVcode updated guidance for coding STRIBILD
4.60 – VL updated guidance for coding undetectable and very high results
Appendix 1 – Date of Birth and Dx_UK_date are now mandatory fields
Appendix 2 – GP_Practice_Code and Prev_HIV_site default codes updated,
GP_dislcosure coding corrected
Appendix 3 – Validations updated
Appendix 4 - Country of birth and infection code for "Not reported" and "Unknown"
updated
Appendix 5 – guidance for coding STRIBILD provided
Appendix 6 – coding for AIDS_illness corrected
Please note these changes do not have to be applied to records that have already been coded.
Please ensure they are actioned in all new attendances.
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Technical and behavioural guidance – v13
2
Background
2.1
The HIV and AIDS Reporting System (HARS) is a dataset that collects information
on patients diagnosed with HIV infection attending HIV outpatient care.
2.2
It is a replacement for the Survey of Prevalent Infections Diagnosed (SOPHID).
2.3
The information is collected by Public Health England (PHE, formerly the Health
Protection Agency - HPA).
2.4
This document is intended for front line NHS staff recording data at HIV outpatient
clinics, and for those responsible for reporting this data to PHE.
2.5
The primary aim of HARS is to collect information which is analysed to inform the
public health response to HIV. This includes monitoring the number and risk factors
of those newly diagnosed and accessing HIV care. It is also used to target and evaluate
prevention policies.
2.6
The secondary aim is to use the information collected through surveillance to produce
aggregated outputs to inform commissioning through tariff development; the
information collected through HARS will directly inform the commissioning of
services.
2.7
The tertiary aim is to use the information collected through HARS to monitor the
access to and the quality of care received by HIV patients.
2.8
HARS has been designed to improve the efficiency of HIV surveillance and to reduce
the reporting burden for providers.
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3
Scope
3.1
This document is intended for front line NHS staff recording data at HIV outpatient
clinics, and for those responsible for reporting the data to PHE.
3.2
This document will provide staff with a guidance explaining how to collect and record
each data item.
3.3
The HARS return includes patient demographic details collected at patient
registration, as well as clinical and risk factor data collected at their first consultation.
Collection of patient registration details is usually led by data entry clerks or front
desk staff. Clinical coding is usually led by clinical staff at first registration and for all
subsequent consultations is supported by the above staff. Running and transmitting
reports to PHE is usually led by administrative staff, supported by information
technology staff.
3.4
This guidance focuses only on the items needed for HARS reporting. For reporting of
other data-sets, such as GUMCAD and GUM Access Monthly Monitoring, please
refer to the appropriate guidance.
3.5
The HARS return is electronic rather than paper-based. The data items collected in the
HARS return, their data model and dictionary label and their
mandatory/required/optional status is shown in Appendix 1. The required format is
provided in appendix 2, and the validation rules are recorded in appendix 3. Country
codes are in appendix 4; ARV information is in appendix 5 and AIDS information in
appendix 6.
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4
Collection and recording guidance
4.1
This section covers what information to record and how to record it. Systems and
processes vary so the application of this guidance should be checked with your
manager, software provider or with staff at PHE if any issues arise.
4.2
The guidance covers the collection and recording of data relevant to the HARS return
and is categorised into the following sections:

General points

Service information

HIV clinic attendance information

Demographic information

Diagnosis information

Treatment information

Clinical information

Death information
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General points
4.3
All patients should be included who have been confirmed as HIV antibody positive.
This includes the attendance at HIV diagnosis where the patient was informed of their
result, even if the patient has not attended for HIV care after HIV diagnosis.
4.4
All consultations should be captured from diagnosis onwards. This includes
attendances for laboratory tests, face to face attendances and also consultations via
email, web camera, telephone and SMS. Any of the above events is hereafter referred
to as a “consultation”. Telephone and short message service (SMS) contacts made
only for conveying results should be excluded.
4.5
All data items should be submitted for every consultation. This includes instances
where information has not changed since the previous record for the same patient (e.g.
ethnicity).
4.6
When a patient attends the clinic for a booked appointment or to a walk-in service, the
patient should be registered and standard demographic details collected. Some patients
may already have provided some basic registration information when calling to make
the appointment.
4.7
The fields are categorised as “mandatory”, “required” and “optional”. These are
indicated in appendix 1. “Mandatory” fields must be completed or the return will be
rejected. “Required” fields are expected to be completed and incompleteness may
lead to return rejection subject to validation rules (Appendix 3). “Optional” fields are
truly optional and if incomplete will not impact upon validation rules.
4.8
Some patients may not provide all these details. This should not prevent them being
registered and accessing the service. If not all these details are collected at the first
attendance, it may be possible to collect some further information at subsequent
patient attendances.
4.9
Patients should be made aware that the questions on the registration form and at sexual
history taking are designed to provide data critical to the public health response of
HIV and help plan their HIV services.
Clinics should be aware that some patients will have questions regarding these items.
If questions are raised, the clinician or specialist HIV nurse should answer with
reference to the information given in section 17. Patient information leaflets are also
available
from:
http://www.hpa.org.uk/web/HPAweb&Page&HPAwebAutoListName/Page/12000557
07560
4.10
If a patient dies, the date of death should be recorded. This death should be reported in
the latest quarterly HARS report with the date the patient last attended, being used as
the ‘attendance date’ and all mandatory fields relating to this last attendance. It is
acceptable to record the date of death and last attendance before the reporting quarter.
4.11
If a patient attends more than once in a day, e.g. for a consultation in the morning
followed by an appointment for bloods in the afternoon, the data from these
attendances should be captured in the same attendance record in the HARS extract.
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4.12
In the XML output file, if a data field is not available or not applicable for that patient
then the field for the corresponding attendance should not be present rather than
reported with a "".
Service information
4.13
Org_ID. Organisation code (of provider). A code that identifies the NHS Trust of
care. This is the organisation ID of the TRUST that the patient is CURRENTLY in
contact with. The NHS standard codes for NHS providers should be used. Patients
can only have one
Org_ID code for one date of consultation.
4.14
Site_code. Site code (of treatment) provides a unique identifier for each site of an
organisation providing the HIV care. This is the site code of the specific service
provider that the patient is CURRENTLY in contact with. The NHS standard codes
for NHS providers should be used. Patients can only have one
Site_code code for
one date of consultation.
4.15
Pt_care_status. Describes patient’s current status of HIV care. In conjunction with
date of consultation, the start and end date of the care at a particular site can be
deduced from this. Patients should be recorded as “first seen at this clinic” if this is
the first attendance following a diagnosis at another service provider (for instance, a
separate GUM clinic, GP etc). “Shared care” means that the patient is registered at the
current site and also seen for aspects of their HIV care at another site. “Ongoing care”
is the default from second attendance until official notification has been received that
the patient has transferred to another service or the patient is reported to have died.
Patients who notify during a consultation that they are transferring to another service,
leaving the UK, or otherwise report an intention to no longer access the service
provider should be coded as “care terminated”. Patients can only have one
Pt_care_status code for one date of consultation.
4.16
Prev_HIV_site. The site code of the HIV clinic where the patient previously received
HIV care. Where patients have received care at more than one site, the most recent
should be given. There are coding options for “care received elsewhere in the UK but
organisation unknown”, “care received outside the UK” and “no HIV care received
elsewhere”. Patients can only have one Prev_HIV_site code for one date of
consultation.
A list of HARS site codes is available from the HARS webpage (see HARS site
code.pdf)
4.17
Ref_to_org. The site code of the HIV organisation to which the patient is currently
referred for shared HIV care. Patients can only have one Ref_to_org code for one
date of consultation.
A list of HARS site codes is available from the HARS webpage (see HARS site
code.pdf)
HIV clinic attendance information
4.18
Consultation Medium Used. Identifies the communication mechanism used to relay
information between the CARE PROFESSIONAL and the PERSON who is the
subject of the consultation, during a CARE ACTIVITY. A record of the telephone or
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telemedicine consultation must be retained in the PATIENT's records. Telephone and
short message service (SMS) contact made solely for informing PATIENTS of results
are excluded. Patients can only have one code for one date of consultation.
4.19
HIVCare_Type. Whether the patient attended to seek medical consultation or for a
diagnostic test. If patients receive medical consultation and diagnostic tests at the
same consultation, the medical consultation test should take precedence. For
domiciliary or outreach activity in place of a medical consultation at the clinic, the
field Consultation Medium Used should be coded as "01 Face to face communication"
and HIVCare_type should be coded as "1 Medical consultation".
4.20
HIVCare_Date. Date of patient consultation; should be coded for every episode of
HIV care consultation (including bloods).
Demographic information
4.21
Patient_ID. Patient’s assigned ID at the clinic. This should be unique to the service
provider. Patients can only have one code for one date of consultation. NHS number
is not to be used. Sites may use an alias instead of the patient ID but this alias must
stay unique to the patient through their clinical care.
4.22
GP_Practice_Code. Organisation code of patient's GP (where available). Leave
blank if patient is not registered or this information is not available. Patients can only
have one code for one date of consultation.
4.23
GP_disclosure. Has the patient consented for their GP to be contacted about the care
of their HIV infection?
4.24
Sdex. Patient’s surname soundex. (Scrambled surname). Patients can only have one
code for one date of consultation. This field is used in conjunction with date of birth
and gender to identify patients accessing care at more than one clinic. Soundex codes
begin with the first letter of the surname followed by a three-digit code. Soundexing
programmes are available upon request.
4.25
Initial. Initial of patient’s first name. This field is used in conjunction with date of
birth and gender to help identify patients accessing care at more than one clinic.
4.26
Date of birth. Patient’s date of birth. Date of birth allows the system to generate the
age of the patient at the date of attendance and also helps to identify patients accessing
care at more than one clinic.
4.27
Gender at birth. Patient’s gender at birth. If a patient has changed their gender, their
birth gender should be recorded as opposed to their gender identity.
4.28
Gender_identity. Patient's current gender identity (as reported by the patient).
4.29
Ethnicity. Patient’s ethnicity, specified by the patient (using NHS codes).
4.30
Country_birth. Patient’s country of birth (appendix 4). Please note the change in
coding for "Not reported" and "Unknown" which is now YYY and ZZZ respectively.
4.31
LSOA. LOWER SUPER OUTPUT AREA of residence. LSOA begins with the first
letter followed by an eight-digit code. Postcodes in Scotland, Northern Ireland,
Channel Islands or Isle of Man should be coded “Z99999999”. Records where the
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patient’s postcode has not been provided to generate LSOA of residence should be
allocated to ‘not known’ and coded “X99999999”. Postcodes outside the United
Kingdom should be allocated to ‘not applicable’ and coded “X99999998”. Mapping
tables from postcode to LSOA are contained within the NHS Postcode Directory
available from the Organisation Data Service - http://systems.hscic.gov.uk/ – an NHS
net connection is required to access this website. Alternatively please email the ODS
helpdesk at [email protected]
4.32
Prisoner. Is the patient CURRENTLY a prisoner? If yes then the field LSOA should
reflect the prison at which they are incarcerated.
4.33
Sex_worker. Is the patient CURRENTLY a sex worker?
4.34
Disability. The PERSON has been diagnosed as disabled or the PERSON considers
themselves to be disabled. A PERSON can have more than one DISABILITY CODE.
This field comes from the NHS data dictionary definition which includes an option for
HIV under “8 Progressive Conditions and Physical Health. Disability refers to a
condition that exists in ADDITION to HIV. I.e. If a patient has HIV ONLY, DO NOT
state they have a disability. If a patient has a disability IN ADDITION to HIV, please
state that they have a disability.
Diagnosis information
4.35
New_diagnosis_UK. Was the patient newly diagnosed in the UK with HIV at this
consultation? If the patient was diagnosed outside this clinic (e.g. initial sample taken
in a GUM stand alone clinic or at a GP) then answer no.
If “Yes” then the field Dx_UK_Date should be populated with the same date as
HIVCare_date.
4.36
Dx_UK_date. Date the patient was first diagnosed as HIV positive in the UK. If
New_diagnosis_UK is “No”, this field must be completed.
This should be the date the initial sample was taken for a positive HIV test if the
patient was newly diagnosed at this clinic (HIV clinic or combined GUM/HIV
service). If the patient was diagnosed in this setting but the date of initial sample was
not recorded, the date of the first HIV consultation (where the patient is told the result)
should be used. Therefore DX_UK_date can be before Firstseen_date and
HIVCare_date.
Any CONFIRMATORY HIV test can be used.
4.37
Dx_abroad_year. If the patient was diagnosed with HIV BEFORE the UK diagnosis
date, record the year of diagnosis outside of the UK. If the patient was not diagnosed
outside of the UK before the UK diagnosis date, leave blank.
4.38
Firstseen_date. Date the patient was first seen for HIV care in this service, following
an initial HIV diagnosis.
4.39
Patient_exposure. Patient’s exposure to HIV i.e. the patient's MOST LIKELY
infection route. Please capture the most medically relevant code in relation to risk of
HIV acquisition at every consultation. (Appendix 2). This should be ascertained by
the clinician or Specialist HIV nurse who takes a full sexual and injecting drug use
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history. Where patients have more than one exposure to HIV, the one associated with
the highest risk of transmission should be selected. The following paper provides the
relative risks of transmission for each exposure and can be used as an aid: Benn Et al.
UK guidelines for the use of post-exposure prophylaxis for HIV following sexual
exposure. International Journal of STI & AIDS 2011; 22: 695.
4.40
Country_infection: Country where patient was likely to have been infected with HIV
– this should be allocated if patient has only had high risk sexual partners in specific
country. Patients can only have one code for this date of consultation. If unknown
(e.g. patient has had high risk partners for HIV in more than one country) leave blank.
(Appendix 4)
4.41
Year_UK_arrival. Year patient arrived in the UK. This does not include short stays
(<6 months), but the arrival in the UK with the intention to live in the UK. If patient is
UK born, leave blank. Used to ascertain whether infection was acquired in UK or
abroad and length of time between UK arrival and HIV diagnosis.
4.42
Diagnosis setting. This field captures the setting where the patient was diagnosed
with HIV infection. What sort of facility (health care setting) was the patient tested
HIV positive at? (Appendix 2)
4.43
Prev test. Has the patient ever had a negative HIV test? This includes HIV tests
undertaken outside of the UK.
4.44
Last_HIVneg. Date patient last tested HIV negative. Used in algorithm to ascertain
length of HIV infection. If the month is not known, enter 1st July followed by the year.
This should include any type of HIV negative test (including POCT or others where
reactives are sent for confirmatory testing)
4.45
Seroconversion. Does the patient have evidence of seroconversion illness at
diagnosis? The typical symptoms include a combination of any of: fever; rash;
maculopapular); myalgia; pharyngitis; headache/aseptic meningitis.
4.46
TRI_result. Result of the test of recent infection laboratory test (avidity index). If
test is invalid/sample insufficient, enter "999". If no test was carried out leave blank.
Only results from the Colindale laboratory should be used.
A new assay has been introduced which uses a shorter range and includes
decimals which are not allowed in the dataset. PHE are working with the SCCI
(formerly Information Standards Board) to update this field in the NHS data
dictionary. In the meantime, please follow the following method to report this
field:
Take the result, multiply by 10 and then round to the nearest whole number.
E.g. Result 4.476 should be reported as 45.
4.47
CN_number. To be assessed at the first consultation in each calendar year. How
many contacts (sexual or injecting) has the patient had in the past year? If patient does
not know or does not answer, leave blank.
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This field (along with CN_contact and CN_tested) should only be collected at the
earliest attendance in a calendar year however the same entry should be reported for
each subsequent attendance in that year.
4.48
CN_contact. How many contacts (sexual or injecting) the patient had in the past year
that are contactable? If patient does not know or does not answer, leave blank.
4.49
CN_tested. How many contacts (sexual or injecting) the patient had in the in the past
year tested for HIV? If patient does not know or does not answer, leave blank.
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Treatment information
4.50
First_ARV_UK. Did the patient start ARV, for the first time in the UK, at this
consultation? If yes then First_ARV_start and Site_ARV_start should be
automatically populated with HIVCare_Date date regardless of previous ARV abroad.
4.51
First_ARV_start. The month and year the patient first ever started ARV (either
abroad or in the UK). The patient does not necessarily have to be treated currently. If
the month is not known, enter 1st July.
4.52
Site_ARV_start. Date the patient FIRST started ARV at this site. The patient does
not necessarily have to be treated currently. If the day of the month is not known,
enter 15, if the month is not known enter July followed by the year.
4.53
PEP_PREP. Was the patient receiving post exposure prophylaxis and/or preexposure prophylaxis in the 6 months prior to HIV diagnosis?
4.54
ARVcode. This is the specific regimen of anti-retroviral therapy the patient has been
prescribed, i.e. the individual drugs. “Anti-retroviral therapy” is the medication
prescribed for the current time period to patients living with HIV infection (appendix
5). It suppresses viral replication and halts disease progression. Patients can have
multiple ARVcodes. Leave blank if not receiving ARV.
As a correction to previous advice boosting doses of Ritonavir should now be
coded to "123 - Ritonavir boosting dose". Any prior entries of this as "42 Ritonavir - any dose" do not have to be amended.
4.55
ARVband. Type of ARV regimen. Patients can only have one code for this date of
consultation. Patients should only be categorised as C if they have: multi-drug
resistance, multi-drug intolerance, significant co-morbidities, or significant drug
interactions. A patient should not be placed in Category C if they are able to
successfully take a guideline recommended standard ARV regimen (this would place
them in Category B despite having a complex ARV history per se). These
combinations should be constructed following PEER review.
4.56
Homedelivery. Is the patient receiving home delivery of ARV that are currently
being prescribed? This means the patient was prescribed ARVs by their HIV provider,
but receives the physical drug delivery at home.
4.55
Clinical Trial indicator. Used to record whether an individual episode of care is
being delivered to a PATIENT as part of a CLINICAL TRIAL involving ARV.
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Clinical information
4.57
CD4_taken. CD4 count taken at this clinic consultation? This should refer to date
diagnostic test was undertaken rather than the test result was delivered.
4.58
CD4. The patient’s CD4 count at this consultation. If no CD4 has been recorded, leave
blank.
4.59
VL_taken. VL taken at this consultation (per mL)? This should refer to date
diagnostic test was undertaken rather than the test result was delivered.
4.60
VL. The patient’s viral load count at this consultation. If no VL has been recorded,
leave blank. Viral loads provide an indication of the virus activity within the patient.
It is used to assess how well ARV is working.
If the result is undetectable please code 1 below the sensitivity threshold, e.g. A result
of <50 should be coded as 49 and a result of <20 should be coded as 19.
If a result is above 10 million please code as 9999999.
4.61
AIDS_illness. AIDS defining illness. Patients can have multiple AIDS illnesses.
Leave field blank if no AIDS defining illness. This information should only be
recorded in relation to whether the patient has as AIDS defining illness at this clinical
consultation. Previous cases of AIDS including that at first attendance should not be
recorded.
4.62
TB_treatment. Is the patient currently on anti-tuberculosis treatment?
4.63
Liver_antiviral_treatment. Is the patient currently on antiviral treatment for chronic
viral liver disease?
4.64
Hep_B. Laboratory evidence of acute or chronic hepatitis B infection?
4.65
Hep_C. Laboratory evidence of acute or chronic hepatitis C infection?
4.66
Malignancy_treatment. Is the patient currently receiving oncological treatment?
4.67
End_organ. Does the patient have severe unstable HIV-associated end organ disease?
4.68
Psych_care. Is the patient under the active psychiatric care of a consultant?
4.69
Pregnancy. Is the patient currently pregnant (from first positive pregnancy test to 1
month post delivery)?
4.70
Social_care. Is the patient currently under the care of a social worker?
Death
4.71
Date of Death. Date of death. If the patient has deceased, the date of death of the
patient should be reported. If the day is not known enter this as 15, if the month is also
not known enter 1st July). Leave blank if patient has not died.
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4.72
Deathcause. ICD10 codes should be reported. Patients can have multiple causes of
death, list in order reported on death form i.e. primary cause of death first. Leave
blank if the patient has not died.
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5
Reporting and transmitting data to PHE
Description
5.1
Each HIV outpatient clinic treating HIV patients is requested to produce a quarterly
electronic data extract of all patient consultations with associated patient information
for the HARS return. These extracts are submitted to PHE for processing and analysis.
The HARS return is electronic and must be submitted in XML format. The data items
collected on the HARS return are shown in Appendix 1.
Running extracts
5.2
In the majority of cases, the clinic’s computer software will be able to extract data
directly from clinic records. This process is likely to vary according to the software
your clinic uses, so please refer to your software provider’s training material for
specific guidance where necessary.
Extract format
5.3
Once you have run the query, the HARS extract report should be produced in XML
format using the XML Schema. If you think the format of your extract differs, please
contact your software provider for further advice. Files that do not match this format
cannot be uploaded into the database at PHE.
Reporting time period
5.4
Each HARS extract should cover one calendar quarter. We are however accepting test
files which may cover a shorter reporting period.
Frequency of reporting
5.5
Reports should be run quarterly, no later than six weeks after the end of the calendar
quarter. You must therefore ensure that patient records have been updated with the
appropriate data (except in the minority of cases where results are delayed) and that
these have been entered onto your computer system within 6 weeks of the end of the
quarter. The HARS Team at PHE will send you a reminder two weeks before the
deadline. Failure to meet the deadline will result in a null return for your clinic’s data
in quarterly feedback reports to the Department of Health, commissioners and Trust
managers. If you have concerns that you are unlikely to be able to meet this deadline
please contact the HARS Team at PHE for advice as soon as possible.
Transmission of the data extract to PHE
5.6
HARS data extracts must be submitted to PHE through the HIV & STI Web Portal.
This portal enables organisations to distribute files to previously identified users in a
secure manner across the Internet. Use of the portal requires a login account name and
password, which will be provided to you by the HARS Team at PHE. Service
providers must have secure connections. Requests for user accounts should be sent to:
[email protected] The web portal can be found at:
https://www.hpawebservices.org.uk/HIV_STI_Webportal.
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6
How PHE uses the data
Purpose of the HARS return
6.1
See section 2.4-2.6
Types of output
6.2
Three types of output will be produced.
6.3
The primary public health surveillance report will be the annual HIV report. In
addition, HARS will produce quarterly tables summarising key epidemiological
variables at the national and local level. These data will include summaries of those
newly diagnosed with HIV, their risk factors, and data relating to those living with a
diagnosed HIV infection. These data will be used to directly inform the public health
response to HIV including the monitoring of prevention initiatives.
6.4
Quality of care indicators will summarise the access to and the quality of care patients
receive, and their clinical outcomes. These will be produced at the national, local and
service provider level and used to evaluate service provision and prevention initiatives.
6.5
Commissioning outcomes will be aggregate and will used to directly inform the
commissioning of services via a national tariff. Outputs will be provided at the service
provider level.
Reporting time period
6.6
PHE output reports will cover quarterly and annual periods.
Frequency of reporting
6.7
National and local surveillance outputs and quality of care indicators will be produced
at on a bi-annual basis. Commissioning data will be available on a quarterly basis.
Presentation of local area data
6.8
Please see the PHE HIV/STI data sharing policy:
http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1247816526850
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7
Confidentiality and anonymity
7.1
A fundamental role of PHE is to collect and use information to identify, investigate
and control outbreaks of disease and inform and the public health response and
prevention. In order to collect accurate HIV data, limited patient identifiers (PII) are
collected. Without the collection of limited patient identifiers, the number of people
living with HIV would be overestimated in surveillance outputs and for
commissioning purposes.
7.2
The HARS dataset will collect limited PII: Soundex, gender and first initial, date of
birth and LSOA of residence. (Soundex is an anonymised surname code, it is not
unique to any specific surname – it provides a one-way link from patient surname to
soundex but not from soundex to surname). These identifiers are currently collected
through existing surveillance systems without consent; no additional PII will be
collected through HARS.
7.3
PHE is covered under the sexual health directions (2000) to collect confidential data
for HIV surveillance and prevention without consent for NHS trusts. Once this
legislation has been repealed (anticipated March 2013) the legislation will
automatically transfer to Section 251 (see 7.4)
7.4
PHE is registered under Section 251 of the Health and Social Care Act 2001 and has
approval from the Patient Information Advisory Group (PIAG) to handle
data for purposes that include surveillance and the control of disease, even where
specific patient consent has not been given. Section 251 is renewed annually.
7.5
Statutory Instrument 2002 No. 1438 in The Health Service (Control of Patient
Information) Regulations 2002 provides the legal basis for this data handling. Details
of this can be found at: http://www.legislation.hmso.gov.uk/si/si2002/20021438.htm
7.6
A PHE Caldicott group ensures that the organisation fulfils its legal and regulatory
obligations when processing patient identifiable information at any time. The group
regularly reviews, audits and evaluates systems in order to ensure systems are
compliant.
7.7
PHE is registered under the Data Protection Act 1998 (registration number Z7749250)
to handle data for diagnostic, public health and other purposes. PHE is very careful to
maintain its procedures strictly within the requirements of the DPA. Further details of
PHE’s commitment to confidentiality are available at:
http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/Surveillance/Safeguar
dingTheConfidentiality/
7.8
Some patients may express concern regarding supplying their data and it being
reported to PHE. If so, the health care worker must explain the uses to be made of the
data i.e. the information recorded and reported aims to improve the service and to
protect public health. This will reassure the vast majority of patients. When
necessary, patients should be reassured that their personal data are held in strict
confidence and that no personally identifiable information will be reported to the PHE.
Patients can also be provided with the HPA leaflet “Information and the Health
Protection Agency” for further information. These leaflets have been distributed to
your clinic but can also be accessed on the HPA website:
http://www.hpa.org.uk/webw/HPAweb&Page&HPAwebAutoListDate/Page/11994519
70071?p=1199451970071
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7.9
If there are still ongoing concerns, systems allow for the use of aliases. Whilst this is
not ideal it is preferable to not recording the data at all. This should then allow for the
reporting of data for these patients.
7.10
The PHE HIV & STI web portal enables organisations to distribute any type of files to
previously identified users in a secure manner across the Internet. The HIV & STI web
portal can be found at: https://www.hpawebservices.org.uk/HIV_STI_Webportal. Use
of the portal requires a login account name and password, which will be available
from the project administrator at the Centre for Infections. The portal supports the
Secure Sockets Layers (SSL) method of communication.
7.11
All staff within PHE have a legal duty to keep patient information confidential. All
records are kept securely in compliance with the Caldicott Guidelines. PHE stores
personal health information on secure servers and all databases are password
protected. Access to the data is strictly controlled and limited to those directly
involved in the collation of the data.
7.12
Data are distributed according to PHE data sharing policy which is designed to protect
data security and eliminate the risk of identifying patients. This is available on
request.
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8
Contact information for support and guidance
8.1
Further guidance on collecting, recording and reporting data for the HARS return is
available from:
HIV and AIDS Reporting Section
HIV and STI Department
Public Health England - Colindale
61 Colindale Avenue
London
NW9 5EQ
Tel: 020 8327 6827
Fax: 020 8200 7868
[email protected]
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Appendix 1: Data items collected on the HARS
return
Diagnosis information
HIV clinic
Consultation
Service
information
Demographics
Category/ Process ID/ Field name
1
Patient_ID
Mandatory /
required /
optional
M
DD Data Element Name
2
GP_Practice_Code
R
3
GP_disclosure
R
4
Sdex
M
PERSON SURNAME SOUNDEX CODE
5
Initial
R
PERSON INITIAL (FIRST)
6
Date of birth
M
PERSON BIRTH DATE
7
Gender_birth
M
PERSON GENDER CODE AT REGISTRATION
8
Gender_identity
M
GENDER IDENTITY CODE (HIV)
9
Ethnicity
R
ETHNIC CATEGORY
10
Country_Birth
R
COUNTRY CODE (BIRTH)
11
LSOA
M
LOWER LAYER SUPER OUTPUT AREA (RESIDENCE)
12
Prisoner
R
PRISONER INDICATOR
13
Sex_worker
R
SEX WORKER INDICATOR
14
Disability
R
DISABILITY CODE
15
Org_ID
M
ORGANISATION CODE (CODE OF PROVIDER)
16
Site_code
M
SITE CODE (OF TREATMENT)
17
Pt_care_status
M
PATIENT HIV CARE STATUS
18
Prev_HIV_site
R
SITE CODE (OF PREVIOUS HIV CARE)
19
Ref_to_Org
R
SITE CODE (REFERRED TO FOR HIV CARE)
20
R
CONSULTATION MEDIUM USED
21
Consultation Medium
Used
HIVCare_type
R
CLINIC consultation PURPOSE CODE (HIV)
22
HIVCare_Date
M
consultation DATE
23
New_diagnosis_UK
M
24
Dx_UK_date
M
NEW HIV DIAGNOSIS IN UNITED KINGDOM
INDICATOR
DIAGNOSIS DATE IN UNITED KINGDOM (HIV)
25
Dx_abroad_year
O
26
Firstseen_date
M
DATE FIRST SEEN
27
Patient_exposure
M
PATIENT EXPOSURE TO HIV
28
Country_infection
R
COUNTRY CODE (HIV INFECTION)
29
Year_UK_arrival
R
YEAR OF UK ENTRY
30
Diagnosis setting
R
INITIAL DIAGNOSIS CARE SETTING (HIV)
LOCAL PATIENT IDENTIFIER (EXTENDED)
GENERAL MEDICAL PRACTICE CODE (PATIENT
REGISTRATION)
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Death
Clinical information
Treatment information
Diagnosis information
Technical and behavioural guidance – v13
31
Prev test
R
32
Last_HIVneg
R
33
Seroconversion
R
34
TRI_result
R
PREVIOUS NEGATIVE HIV TEST IN UNITED
KINGDOM INDICATOR
DATE LAST NEGATIVE HIV TEST IN UNITED
KINGDOM
PATIENT DIAGNOSIS INDICATOR
(SEROCONVERSION ILLNESS)
TEST OF RECENT INFECTION RESULT (HIV)
35
CN_number
O
NUMBER OF HIV CONTACTS
36
CN_contact
O
NUMBER OF HIV CONTACTABLE CONTACTS
37
CN_tested
O
38
First_ARV_UK
M
39
First_ARV_start
R
40
Site_ARV_start
R
NUMBER OF HIV CONTACTABLE CONTACTS
TESTED FOR HIV
FIRST ANTIRETROVIRAL THERAPY IN UNITED
KINGDOM INDICATOR
YEAR AND MONTH FIRST STARTED
ANTIRETROVIRAL THERAPY
START DATE (ANTIRETROVIRAL THERAPY AT
CURRENT PROVIDER)
41
PEP_PREP
R
42
ARVcode
R
43
ARVband
M
44
Homedelivery
R
45
Clinical Trial indicator
R
ANTIRETROVIRAL THERAPY HOME DELIVERY
INDICATOR
CLINICAL TRIAL INDICATOR
46
CD4_taken
M
CD4 CELL COUNT PERFORMED INDICATOR
47
CD4
R
CD4 CELL COUNT
48
VL_taken
M
VIRAL LOAD COUNT PERFORMED INDICATOR
49
VL
R
VIRAL LOAD COUNT
50
AIDS_illness
R
AIDS DEFINING ILLNESS TYPE
51
TB_treatment
M
TUBERCULOSIS TREATMENT INDICATOR (HIV)
52
Liver_antiviral_treatment
M
CHRONIC VIRAL LIVER DISEASE INDICATOR (HIV)
53
Hep_B
54
Hep_C
55
Malignancy_treatment
M
MALIGNANCY TREATMENT INDICATOR (HIV)
56
End_organ
M
57
Psych_care
M
PATIENT DIAGNOSIS INDICATOR (HIV END
ORGAN DISEASE)
PSYCHIATRIC CARE INDICATOR (HIV)
58
Pregnancy
M
PREGNANCY INDICATOR (HIV)
59
Social_care
M
SOCIAL WORKER CARE INDICATOR (HIV)
60
Date of Death
R
PERSON DEATH DATE
61
Deathcause
R
DEATH CAUSE ICD CODE (CONDITION)
ANTIRETROVIRAL THERAPY DRUG PRESCRIBED
CODE
ANTIRETROVIRAL THERAPY GROUP CODE
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Appendix 2: Summary of format and available
coding options for data items collected on the
HARS return
Field name
Coding
Patient_ID
NHS standard E.g. MM12343256
GP_Practice_Code
GP_disclosure
NHS standard e.g. A81001
http://systems.hscic.gov.uk/data/ods/datadownloads/gppractice
See GP_Practice_Code, or
W99999 – Not registered
X99999 – Registered but not known
Y99999 – Refused to disclose
Z99999 – Not asked (default)
Y yes
N no
9 Patient not asked
Sdex
NHS standard E.g. B620
Initial
E.g. B
Date of birth
NHS standard ccyy-mm-dd e.g. 1979-06-09
Gender_birth
0 Not Known
1 Male
2 Female
9 Not Specified
Gender_identity
1 Male
2 Female
3 Transgender
Ethnicity
NHS standard E.g.
White
A British
B Irish
C Any other White background
Mixed
D White and Black Caribbean
E White and Black African
F White and Asian
G Any other mixed background
Asian or Asian British
H Indian
J Pakistani
K Bangladeshi
L Any other Asian background
Black or Black British
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M Caribbean
N African
P Any other Black background
Other Ethnic Groups
R Chinese
S Any other ethnic group
Z Not stated
99 Not known
Country_Birth
LSOA
NHS standard E.g. GBR - UK (see Country_birth variable worksheet)
NHS standard E.g.. E0100001
Prisoner
Y=Yes, N=No (default) .
Sex_worker
Y=Yes, N=No (default).
Disability
NHS standard E.g.. 01
01 Behaviour and Emotional
02 Hearing
03 Manual Dexterity
04 Memory or ability to concentrate, learn or understand (Learning Disability)
05 Mobility and Gross Motor
06 Perception of Physical Danger
07 Personal, Self Care and Continence
08 Progressive Conditions and Physical Health (such as HIV, cancer, multiple
sclerosis, fits etc)
09 Sight
10 Speech
XX Other
NN No DISABILITY
ZZ Not Stated (PERSON asked but declined to provide a response)
Y=Yes, N=No (default)
Org_ID
Site_code
Pt_care_status
NHS standard and collected by GUMCAD E.G. RR1
http://systems.hscic.gov.uk/data/ods/datadownloads/othernhs
NHS standard E.g. RR101
http://systems.hscic.gov.uk/data/ods/datadownloads/othernhs
1 Patient seen for HIV care at this service for the
first time at this consultation
2 Providing shared care for patient
3 Ongoing care (default)
4 Care terminated at this consultation
Prev_HIV_site
NHS standard E.g. RR101
http://systems.hscic.gov.uk/data/ods/datadownloads/othernhs
See Org_ID code, or
X9999 – HIV care received elsewhere in the UK but organisation unknown
Y9999 – HIV care received elsewhere outside the UK
Z9999 – No HIV care received elsewhere (default)
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Ref_to_Org
Consultation Medium
Used
NHS standard E.g. RR101
http://systems.hscic.gov.uk/data/ods/datadownloads/othernhs
NHS standard E.g. 01
01 Face to face communication
02 Telephone
03 Telemedicine web camera
04 Talk type for a PERSON unable to speak
05 Email
06 Short Message Service (SMS) - Text Messaging
98 Other *
HIVCare_type
1 Medical consultation
2 Diagnostic test
3 Other
HIVCare_Date
Dx_UK_date
NHS standard and collected by GUMCAD ccyy-mm-dd E.g. 2010-04-21
ccyy-mm-dd E.g. 2002-02-08
Dx_abroad_year
Firstseen_date
Patient_exposure
Country_infection
YYYY, e.g.1999
ccyy-mm-dd E.g. 2002-02-08
01
Sex between men
02
Injecting drug use
03
Sex between men and women
04
Mother to child transmission
05
Contact with blood products (non occupational)
06
Exposure via health care work
07
Men who have sex with men who also have injected drugs
99 Undetermined
NHS standard E.g. GBR - UK (see Country_birth variable worksheet)
Year_UK_arrival
YYYY, e.g. 2004
Diagnosis setting
01 GUM and/or HIV clinic
02 Antenatal clinic
03 General Practice
04 Medical admissions for in-patient care
05 Infectious disease unit (outpatient only)
06 Accident and Emergency (including minor injuries department)
07 Other outpatient
08 Drug misuse service
09 Prison
10 Blood transfusion service
11 Other setting in the UK (not specified)
12 Community setting
97 Diagnosed outside UK
99 Care Setting Not known
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Prev_test
Y=Yes, N=No (default)
Last_HIVneg
ccyy-mm E.g. 2008-02
Seroconversion
Y=Yes, N=No (default)
TRI_result
e.g. 80 (range 1-120 and 999)
CN_number
E.g. 11
CN_contact
E.g. 8
CN_tested
E.g. 4
First_ARV_UK
Y=Yes, N=No (default)
First_ARV_start
YYYY-MM e.g. 1997- 07
Site_ARV_start
ccyy-mm-dd E.g. 2008-07-08
PEP_PREP
1 No
PEP_PREP
2 Yes – PEP
3 Yes – PREP
4 - Yes - PEP and PREP
ARVcode
9 Unknown
See ARVcode variable worksheet. E.g. ARVcode=5,
ARVband
A First ARV regimen
ARVband
Homedelivery
B Second and subsequent ARV regimens
C Complex ARV
X Not on ARV
Homedelivery
Clinical Trial indicator
Patients should only be categorised as C if they have: multi-drug resistance, multidrug intolerance, significant co-morbidities, or significant drug interactions. A
patient should not be placed in Category C if they are able to successfully take a
guideline recommended standard ART regimen . This would place them in Category
B despite having a complex ARV history per se . These combinations should be
constructed following PEER review
Y=Yes, N=No (default)
01 PATIENT is taking part in a CLINICAL TRIAL
02 PATIENT IS NOT taking part in a CLINICAL TRIAL (default)
Y=Yes, N=No (default)
CD4_taken
CD4
e.g.475
VL_taken
Y=Yes ,N=No (default)
VL
e.g. 78783
AIDS_illness
TB_treatment
See AIDS definition worksheet, e.g. if the patient had TB and PCP, it would be
coded as follows: AIDS_illness_1=20, AIDS_illness_2=23
Y=yen=No (default)
Liver_antiviral_treatment
Y=yen=No (default)
Hep_B
Y=yen=No (default)
Hep_C
Y=yen=No (default)
Malignancy_treatment
Y=yen=No (default)
End_organ
Y=yen=No (default)
Psych_care
Y=yen=No (default)
Pregnancy
Y=yen=No (default)
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Social_care
Y=yen=No (default)
Date of Death
Deathcause
NHS standard E.g.. ccyy-mm-dd E.g. 2011-07-11
ICD10 code (condition)
e.g. A15 (TB)
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Appendix 3 - HARS Validation Rules
The HARS dataset uses an XML schema which contains components of validation for field
length and type.
The XML schema does not validate the contents of fields against others therefore it is
necessary to perform a set of validations to ensure the quality of data is of a high level. The
validations will be run one the file has passed the XML schema check and is passed into PHE
servers.
If any queries are identified, one of 4 actions will occur:
A – The clinic must correct the error otherwise the dataset will be rejected
B – The clinic is strongly recommended to correct the error however the data will be accepted
otherwise with PHE recoding
C – The data item will be corrected by PHE
D – If more than X% of records contain a query then the sender will receive an automated
email telling them the return has to be re-submitted with a list of the errors to correct.
Table: Validation rules
Validation
Code
Validation Rule
Description
Desired
action
1
Dataset is not in the
recognised file format
Dataset is not in XML schema
A
2
Incorrect field names
1 or more field names are not recognised
A
1 or more cells are not the correct data
type/format
A
1 or more cells in mandatory fields are
null
A
A
3
4
Data fields are not the
correct data type or data
format
Mandatory data fields have a
null value
5
Data fields contain invalid
data codes
1 or more cells contain unrecognised
codes (re look-up tables)
6
Date of patient consultation
is outside of survey reporting
period
7
Unrecognised LSOA
Dates (HIVCare_Date) reported are for a
quarter outside of survey reporting period,
UNLESS Date of Death is not null
1 or more cells contains an unrecognised
LSOA code (re look-up)
8
Unrecognised Organisation
code (of provider)
1 or more cells contains an unrecognised
Org_ID (re-look-up)
A
9
Unrecognised site code (of
treatment)
1 or more cells contains an unrecognised
Site_code (re-look-up)
A
10
Unrecognised code of site
where patient was previously
seen for care
1 or more cells contains an unrecognised
Prev_HIV_site (re-look-up)
B
11
Unrecognised HIV
organisation to which patient
has been formally referred
1 or more cells contains an unrecognised
Ref_to_Org (re-look-up)
B
12
Unrecognised GP code
1 or more cells contains an unrecognised
GP_practice_code (re-look-up)
B
A
B
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13
Unrecognised country of birth
code
1 or more cells contains an unrecognised
Country_Birth (re-look-up)
B
14
Unrecognised ARV code
1 or more cells contains an unrecognised
ARVcode (re look-up)
B
15
Unrecognised AIDS code
1 or more cells contains an unrecognised
AIDS_illness (re look-up)
B
16
Unrecognised death code
1 or more cells contains an unrecognised
Deathcause (re look-up)
B
17
1 patient reported with more
than 1 date of birth in the
dataset
Identified by unique Patient_ID and
Site_code with more than 1 date of birth
C
18
1 patient reported with more
than 1 soundex code in the
dataset
Identified by unique Patient_ID and
Site_code with more than 1 Sdex
C
19
1 patient reported with more
than 1 initial in the dataset
Identified by unique Patient_ID and
Site_code with more than 1 Initial
C
20
1 patient reported with more
than 1 Gender in the dataset
Identified by unique Patient_ID and
Site_code with more than 1
Gender_identity
C
21
1 patient reported with more
than 1 ethnic group in the
dataset
Identified by unique Patient_ID and
Site_code with more than 1 Ethnicity
C
22
1 patient reported with more
than 1 exposure group in the
dataset
Identified by unique Patient_ID and
Site_code with more than 1
Patient_exposure
C
23
1 patient reported with more
than 1 Country_birth in the
dataset
Identified by unique Patient_ID and
Site_code with more than 1 Country_birth
C
Identified when any of the following dates
are after File submission date:
24
25
Any date field containing a
date after the File submission
date
Any date field containing a
date after that of reporting
quarter
1.
2.
3.
4.
5.
6.
7.
8.
Date of birth
HIVCare_Date
Firstseen_date
Dx_UK_date
Last_HIVneg
First_ARV_start*
Site_ARV_start
Date of death
(A)
(A)
(A)
(B)
(B)
(B)
(B)
(B)
Identified by comparing any of the
following dates with last day in reporting
quarter:
1. Firstseen_date
(A)
2. Date of birth
(A)
3. Dx_UK_date
(B)
4. Year_UK_arrival*
(B)
5. Last_HIVneg
(B)
6. First_ARV_start*
(B)
7. Site_ARV_start
(B)
8. Date of death
(B)
A and B
A and B
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26
Any date field inconsistent to
date of patient consultation
Identified when any of the following dates
are after HIVCare_Date:
1. Date of birth
(A)
2. Firstseen_date
(A)
3. Dx_UK_date
(B)
4. Year_UK_arrival*
(B)
5. Last_HIVneg
(B)
A and B
Or when any of the following dates are
before HIVCare_Date:
1. File submission date (A)
2. Date of death
(B)
27
Any date field inconsistent to
date of birth
Identified when any of the following dates
are prior to date of birth:
1. HIVCare_Date
(A)
2. Firstseen_date
(A)
3. File submission date (A)
4. Dx_UK_date
(B)
5. Year_UK_arrival*
(B)
6. Last_HIVneg
(B)
7. First_ARV_start*
(B)
8. Site_ARV_start
(B)
9. Date of death
(B)
A and B
Identified when any of the following dates
are after Dx_UK_date:
1. Date of birth
(A)
2. Year_UK_arrival*
(B)
3. Last_ HIVneg
(B)
28
29
Any date field inconsistent to
date of diagnosis
Any date field inconsistent to
date first seen at clinic
Or when any of the following dates are
prior to DX_UK_date:
1. HIVCare_Date
(A)
2. File submission date (A)
3. First_ ARV_start*
(B)
4. Site_ ARV_start
(B)
A and B
Identified when any of the following dates
are after Firstseen_date:
1. Date of birth
(A)
2. Dx_UK_date
(B)
3. Year_UK_arrival*
(B)
4. Last_HIVneg
(B)
A and B
Or when any of the following dates are
prior to Firstseen_date:
1. HIVCare_Date
(A)
2. File submission date (A)
3. Site_ARV_start
(B)
Identified when any of the following dates
are after Year_UK_arrival:
1. Date of birth
(A)
30
Any date field inconsistent to
year of UK arrival
Or when any of the following dates are
prior to Year_UK_arrival:
1. HIVCare_Date
(A)
2. Firstseen_date
(A)
4. File submission date (A)
A and B
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3. Dx_UK_date
4. Site_ARV_start
5. Date of death
(B)
(B)
(B)
Identified when any of the following dates
are after Last_HIVneg:
1. Date of birth
(A)
31
32
Any date field inconsistent to
date patient last tested
negative for HIV
Any date field inconsistent to
date patient first started
treatment ever
Identified when any of the following dates
are prior to Last_HIVneg:
1. HIVCare_Date
(A)
2. Firstseen_date
(A)
5. File submission date (A)
3. First_ARV_start*
(B)
4. Site_ARV_start
(B)
5. Date of death
(B)
A and B
Identified when any of the following dates
are after First_ARV_start:
1. Date of birth
(A)
2. Last_HIVneg
(B)
Identified when any of the following dates
are prior to First_ARV_start:
1. Date of death
A and B
(B)
Identified when any of the following dates
are after Site_ARV_start:
33
Any date field inconsistent to
date patient first started
treatment at current site
1.
2.
3.
4.
Date of birth
Firstseen_date
Dx_UK_date
Last_HIVneg
(A)
(A)
(B)
(B)
A and B
Identified when any of the following dates
are prior to Site_ARV_start:
6. File submission date (A)
7. Date of death
(B)
Identified when any of the following dates
are after Date of death:
34
35
Any date field inconsistent to
date of death
Duplicate data record in the
current dataset
1.
2.
3.
4.
5.
5.
6.
7.
HIVCare_Date
Date of birth
Firstseen_date
Year_UK_arrival*
Last_HIVneg
First_ARV_start*
Site_ARV_start
(A)
(A)
(A)
(B)
(B)
(B)
(B)
Identified by the same Site_code,
Patient_ID, HIVCare_Date
B
C – Only if all
the data items
are identical
for 2 or more
records with
the same
Patient_ID. If
all fields for
duplicate
patients are
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Technical and behavioural guidance – v13
not identical
PHE will
merge on an
algorithm
during
subsequent
processing
Gender_birth=2 (Female) and
Patient_exposure =01 (Sex between men)
or 07 (men who have sex with men who
also inject drugs
Gender_identity=2 (Female) and
Patient_exposure =01 (Sex between men)
or 07 (men who have sex with men who
also inject drugs
Identified by Date of birth, HIVCare_Date
and Patient_exposure =04 (Mother to
child transmission)
36
Female at birth but exposure
to MSM
37
Female identity but exposure
to MSM
38
Mother to child transmission
prior to 1980
39
HIV diagnosis date prior to
1980
Dx_UK_date or Dx_abroad_year prior to
1980
A
40
ARV starting prior to 1985
Site_ARV_start prior to 1985
A
41
Unusual CD4 count
Identified by CD4<1 or >2000
B
42
Under 15 years old but
transmission is not mother to
child or blood or unknown
Identified by Date of birth, HIVCare_Date
and Patient_exposure not equal to 04
(MTCT) or 05 (Blood) or 99 (unknown)
B
43
Age>120
Identified by Date of birth and
HIVCare_Date
A
CN_contact > CN_number
Or >1000
B
CN_tested > CN_number
Or >1000
B
44
45
46
47
48
49
50
Number of contactable
partners greater than number
of partners
Or abnormally high
Number of tested partners
greater than number of
partners
Or abnormally high
Number of tested partners
greater than number of
contactable partners
Or abnormally high
ARV information provided but
no ARV start date reported
ARVband indicates patient is
not on treatment but
treatment information is
provided
ARVband indicates patient is
on treatment but no
treatment information is
provided
Patient is receiving ARV
through home delivery but no
ARV information
B
B
B
CN_tested > CN_contact
Or >1000
B
ARVcode not null but Site_ARV_start null
B
ARVband=N but Site_ARV_start or
ARVcode not null
B
ARVband=A, B or C but Site_ARV_start
or ARVcode null
B
Homedelivery=Y but Site_ARV_start or
ARVcode null
B
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Technical and behavioural guidance – v13
51
52
53
54
55
56
57
58
59
60
61
62
63
64
65
66
67
CD4 is taken but no count
provided
CD4 count is provided but
recorded as not taken
Viral load is taken but no
count provided
Viral load count is provided
but recorded as not taken
Viral load is same as
previous count (only if above
50 copies/mL)
Patient is pregnant but also
male at birth
Patient is pregnant but aged
<10 or >55
Death cause is provided but
no date of death
Date of death provided but
no Death_cause
Country of birth is reported
as UK but year of UK arrival
is also complete
Country of birth is outside UK
but year of UK arrival is not
reported
The patient has had a
previous HIV test prior to
being diagnosed but no date
of last negative test in UK
The patient has not had a
previous HIV test prior to
being diagnosed but date of
last negative test in UK has
been completed
The patient has an aids
defining illness of Bacterial
infections or LIP but the
patient is over 13 years of
age
The patient has an aids
defining illness of MTB but
the patient is under 13 years
of age
The patient has an aids
defining illness of toxoplasma
of the brain or
cytomegalovirus disease or
herpes simplex virus but the
patient is under one month of
age
Date of UK diagnosis is not
complete
CD4_taken = Y but CD4 is null
B
CD4_taken = N but CD4 contains a count
B
VL_taken = Y but VL is null
B
VL_taken = N but VL contains a count
B
Identified by the same VL and Patient_ID
but different HIVCare_Date
B
Pregnancy = Y and Gender_birth = 1
B
Identified by Pregnancy = Y and Date of
birth and HIVCare_Date
B
Deathcause not null but Date of death null
A
Deathcause null but Date of death not null
B
Year_UK_arrival complete but
Country_Birth = UK
B
Country_Birth not UK but Year_UK_arrival
is null
B
Prev test = Y but Last_HIVneg is null
B
Prev test = N but Last_HIVneg is not null
B
Identified by AIDS_illness=1 or 15 and
Date of birth and HIVCare_Date
B
Identified by AIDS_illness=20 and Date of
birth and HIVCare_Date
B
Identified by AIDS_illness=9 or 11 or 27
and Date of birth and HIVCare_Date
B
Identified by missing Dx_UK_date
A
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Technical and behavioural guidance – v13
Appendix 4 – Country coding (relates to country
of birth and country of infection)
Code
AFG
ALA
ALB
DZA
ASM
AND
AGO
AIA
ATA
ATG
ARG
ARM
ABW
SHN
AUS
AUS
AUT
AZE
BHS
BHR
UMI
BGD
BRB
ATF
BLR
BEL
BLZ
BEN
BMU
BTN
BOL
BIH
BWA
BVT
BRA
IOT
VGB
BRN
BGR
BFA
MMR
BDI
KHM
CMR
CAN
CPV
CYM
CAF
TCD
CHL
CHN
CXR
PYF
CCK
COL
Code Description
Afghanistan
Åland Islands
Albania
Algeria
American Samoa
Andorra
Angola
Anguilla
Antarctica
Antigua and Barbuda
Argentina
Armenia
Aruba
Ascension Island
Ashmore and Cartier Islands
Australia
Austria
Azerbaijan
Bahamas, The
Bahrain
Baker Island
Bangladesh
Barbados
Bassas da India
Belarus
Belgium
Belize
Benin
Bermuda
Bhutan
Bolivia
Bosnia and Herzegovina
Botswana
Bouvet Island
Brazil
British Indian Ocean Territory
British Virgin Islands
Brunei (Darussalam)
Bulgaria
Burkina Faso
Burma
Burundi
Cambodia
Cameroon
Canada
Cape Verde
Cayman Islands
Central African Republic
Chad
Chile
China
Christmas Island
Clipperton Island
Cocos (Keeling) Islands
Colombia
st
Effective from 31 March 2014
Page 35 of 41
Technical and behavioural guidance – v13
COM
COD
COG
COK
AUS
CRI
CIV
HRV
CUB
CYP
CZE
DNK
DJI
DMA
DOM
ECU
EGY
SLV
GNQ
ERI
EST
ETH
ATF
FLK
FRO
FJI
FIN
FRA
FXX
GUF
PYF
ATF
GAB
GMB
PSE
GEO
DEU
GHA
GIB
ATF
GRC
GRL
GRD
GLP
GUM
GTM
GGY
GIN
GNB
GUY
HTI
HMD
VAT
HND
HKG
UMI
HUN
Comoros
Congo, Democratic Republic of
the
Congo, Republic of the
Cook Islands
Coral Sea Islands
Costa Rica
Cote d'Ivoire
Croatia
Cuba
Cyprus
Czech Republic
Denmark
Djibouti
Dominica
Dominican Republic
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Ethiopia
Europa Island
Falkland Islands (Islas Malvinas)
Faroe Islands
Fiji
Finland
France
France, Metropolitan
French Guiana
French Polynesia
French Southern and Antarctic
Lands
Gabon
Gambia, The
Gaza Strip
Georgia
Germany
Ghana
Gibraltar
Glorioso Islands
Greece
Greenland
Grenada
Guadeloupe
Guam
Guatemala
Guernsey
Guinea
Guinea-Bissau
Guyana
Haiti
Heard Island and McDonald
Islands
Holy See (Vatican City State)
Honduras
Hong Kong
Howland Island
Hungary
st
Effective from 31 March 2014
Page 36 of 41
Technical and behavioural guidance – v13
ISL
IND
IDN
IRN
IRQ
IRL
IMN
ISR
ITA
JAM
SJM
JPN
UMI
JEY
UMI
JOR
ATF
KAZ
KEN
UMI
KIR
PRK
KOR
KWT
KGZ
LAO
LVA
LBN
LSO
LBR
LBY
LIE
LTU
LUX
MAC
MKD
MDG
MWI
MYS
MDV
MLI
MLT
MHL
MTQ
MRT
MUS
MYT
MEX
FSM
UMI
MDA
MCO
MNG
MNE
MSR
MAR
MOZ
MMR
Iceland
India
Indonesia
Iran (Islamic Republic of)
Iraq
Ireland
Isle of Man
Israel
Italy
Jamaica
Jan Mayen
Japan
Jarvis Island
Jersey
Johnston Atoll
Jordan
Juan de Nova Island
Kazakhstan
Kenya
Kingman Reef
Kiribati
Korea, Democratic People's
Republic of
Korea, Republic of
Kuwait
Kyrgyzstan
Lao People's Democratic
Republic
Latvia
Lebanon
Lesotho
Liberia
Libya
Liechtenstein
Lithuania
Luxembourg
Macao
Macedonia
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Martinique
Mauritania
Mauritius
Mayotte
Mexico
Micronesia, Federated States of
Midway Islands
Moldova (Republic of)
Monaco
Mongolia
Montenegro
Montserrat
Morocco
Mozambique
Myanmar
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Effective from 31 March 2014
Page 37 of 41
Technical and behavioural guidance – v13
NAM
NRU
UMI
NPL
NLD
ANT
NCL
NZL
NIC
NER
NGA
NIU
NFK
MNP
NOR
OMN
PAK
PLW
PSE
UMI
PAN
PNG
PRY
PER
PHL
PCN
POL
PRT
PRI
QAT
REU
ROU
RUS
RWA
BLM
SHN
KNA
LCA
MAF
SPM
VCT
WSM
SMR
STP
SAU
SEN
SRB
SYC
SLE
SGP
SVK
SVN
SLB
SOM
ZAF
SGS
ESP
LKA
Namibia
Nauru
Navassa Island
Nepal
Netherlands
Netherlands Antilles
New Caledonia
New Zealand
Nicaragua
Niger
Nigeria
Niue
Norfolk Island
Northern Mariana Islands
Norway
Oman
Pakistan
Palau
Palestinian Territory, Occupied
Palmyra Atoll
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Pitcairn Islands
Poland
Portugal
Puerto Rico
Qatar
Reunion
Romania
Russian Federation
Rwanda
Saint Barthelemy
Saint Helena
Saint Kitts and Nevis
Saint Lucia
Saint Martin
Saint Pierre and Miquelon
Saint Vincent and the
Grenadines
Samoa
San Marino
Sao Tome and Principe
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Georgia and the South
Sandwich Islands
Spain
Sri Lanka
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Technical and behavioural guidance – v13
SDN
SUR
SJM
SWZ
SWE
CHE
SYR
TWN
TJK
TZA
THA
TLS
TGO
TKL
TON
TTO
ATF
TUN
TUR
TKM
TCA
TUV
UGA
UKR
ARE
GBR
USA
UMI
URY
UZB
VUT
VEN
VNM
VIR
VGB
VIR
UMI
WLF
PSE
ESH
WSM
YEM
COD
ZMB
ZWE
YYY
ZZZ
Sudan
Suriname
Svalbard and Jan Mayen Islands
Swaziland
Sweden
Switzerland
Syrian Arab Republic
Taiwan, Province of China
Tajikistan
Tanzania (United Republic 0f)
Thailand
Timor-Leste
Togo
Tokelau
Tonga
Trinidad and Tobago
Tromelin Island
Tunisia
Turkey
Turkmenistan
Turks and Caicos Islands
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom of Great Britain
and Northern Ireland
United States of America
United States Minor Outlying
Islands
Uruguay
Uzbekistan
Vanuatu
Venezuela (Bolivarian Republic
of)
Vietnam
Virgin Islands
Virgin Islands (British)
Virgin Islands (United States)
Wake Island
Wallis and Futuna
West Bank
Western Sahara
Western Samoa
Yemen
Zaire
Zambia
Zimbabwe
Not recorded
Unknown
st
Effective from 31 March 2014
Page 39 of 41
Technical and behavioural guidance – v13
Appendix 5 – ARV coding
ARVcode
1
3
4
5
6
7
9
10
11
12
13
19
20
21
24
39
41
42
43
45
46
47
48
49
61
62
63
70
90
95
98
99
110
120
121
122
123
124
Drug
Zidovudine (AZT)
Didanosine (ddI)
Stavudine (d4T)
Lamivudine (3TC)
Abacavir
Combivir (AZT + 3TC)
Trizivir (AZT+3TC+Abacavir)
Tenofovir
Emtricitabine
Kivexa (3TC + Abacavir)
Truvada (Tenofovir/TDF + emtricitabine /FTC)
Other NRTI
Nevirapine
Efavirenz
Etravirine/TMC125
Other NNRTI
Indinavir
Ritonavir - any dose
Nelfinavir
Amprenavir
Lopinavir
Saquinavir (form unknown)
Atazanavir
Other PI
Fosamprenavir
Tipranavir
Darunavir/TMC114
T20/Enfuvirtide
Blinded treatment in clinical
Maraviroc
Other drug
Not Known
Raltegravir/MK-0518
Atripla (Efav + Tenof + Emtric)
Rilpirivine
Eviplera (RVP, + TDF + Emtric)
Ritonavir Boosting Dose
LPV/r (KALETRA)
Acronym
ZDV
DDI
D4T
3TC
ABC
CBV
TRIZ
TDF
FTC
KVX
TVD
ONRTI
NVP
EFV
ETV
ONNRTI
IDV
RTV
NFV
APV
LPV
SQV
ATV
OPI
FPV
TPV
DRV
T20
CLIN
MVC
RAL
ATR
RPV
EVP
RTV
KAL
Stribild should be coded as a combination of 3 drugs:
13 (Truvada)
98 (Other drug)
98 (Other drug)
st
Effective from 31 March 2014
Page 40 of 41
Technical and behavioural guidance – v13
Appendix 6 – AIDS coding
Code
01
02
03
04
05
06
07
08
09
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
Description
Bacterial infections, multiple or recurrent in a child under 13 years of age
Candidiasis of bronchi, trachea or lungs
Candidiasis, oesophageal
Cervical cancer, invasive*
Coccidioidomycosis, disseminated or extrapulmonary
Cryptocococcosis, extrapulmonary
Cryptosporidiosis, intestinal with diarrhoea (>1 month's duration)
Cytomegalovirus retinitis (with loss of vision)
Cytomegalovirus disease (other than liver, spleen, or nodes) in a patient over one month of
age
Encephalopathy, HIV-related
Herpes simplex virus (HSV): chronic ulcer(s) (>1 month's duration); or bronchitis, pneumonitis,
or oesophagitis in a patient over one month of age
Histoplasmosis, disseminated or extrapulmonary
Isosporiasis, intestinal with diarrhoea (>1 month's duration)
Kaposi's sarcoma (KS)
Lymphoid interstitial pneumonia (LIP) in a child under 13 years of age
Lymphoma, Burkitt's (or equivalent term)
Lymphoma, immunoblastic (or equivalent term)
Lymphoma, primary, of the brain
Mycobacterium avium complex (MAI) or M. kansasii, disseminated or extrapulmonary
MTB, pulmonary in an adult or an adolescent (aged 13 years or over)*
MTB, extrapulmonary
Mycobacterium, other species or unidentified species, disseminated or extrapulmonary
Pneumonia carinii pneumonia (PCP)
Pneumonia, recurrent*
Progressive multifocal leucoencephalopathy (PML)
Salmonella (non-typhoid) septicaemia, recurrent
Toxoplasma of the brain in a patient over one month of age
Wasting syndrome due to HIV
st
Effective from 31 March 2014
Page 41 of 41