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CONSOLIDATED GUIDELINES ON

PERSON‑CENTRED
HIV PATIENT MONITORING
AND CASE SURVEILLANCE

JUNE 2017

GUIDELINES
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3. HIV CASE SURVEILLANCE

Summary of key recommendations in this chapter
1. Standardization of sentinel events and indicators. Countries should collect core

information on a standardized set of sentinel events and indicators, including at a
minimum, the six key cascade events described in these guidelines. WHO provides
guidance on key indicators for primarily paper‑based patient monitoring systems and
additional indicators for electronic systems or periodic review, especially of patient
monitoring tools.

2. De-duplication of records to support facilities and improve data quality.
HIV case surveillance should provide de-duplicated counts of diagnosed persons
and people on treatment for reporting, to be shared with facilities. WHO provides
guidance on such approaches.

3. Country situation analysis. Improvements to HIV case surveillance, patient
monitoring and unique identifiers should be based on a country situation analysis
that identifies and costs incremental improvements. WHO provides a tool for country
situation analysis.

4. HIV diagnosis and building on patient monitoring. HIV case surveillance should
start with a diagnosis of HIV infection and build on existing patient monitoring
systems. WHO provides guidance on HIV case definitions.

5. Key population (KP) data. Routinely collected data can be used to describe access by
key populations to services; however, confidentiality and security issues are paramount
when collecting data related to KP, whether in patient monitoring or case surveillance
systems. In most settings, patient records should not include the KP category and any
information collected should be used to support patient management and referral to
care. The probable route of transmission can be assessed at the point of diagnosis and
used to disaggregate data in HIV case surveillance systems. WHO provides guidance
on how to address issues around KP data collection and reporting.

Additional recommendations relevant to this chapter
6. Transition progressively from paper-based to electronic patient information

systems. Countries should use a tiered approach to when and how patient and
case monitoring data from paper tools are entered electronically based on resource
availability by site or setting, starting with high-volume sites, e.g. with more than
2000 patients. WHO provides an example of a tiered approach.

7. Strengthen and establish different data security levels. Countries should
assess and establish different security levels for data elements, and invest in robust
databases and policies to protect security and confidentiality based on risks and
benefits in individual settings. WHO provides the major headings to be included
and provides reference to additional specialized guidance.

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3. HIV case surveillance 99

3.1 Overview
HIV case surveillance refers to the reporting of an initial diagnosis of HIV infection and defined
sentinel events from every person diagnosed with HIV to a public health agency responsible
for monitoring and controlling the epidemic. Key sentinel events include HIV diagnosis, entry
into care, first CD4 count, initiation of ART, viral suppression and death. Information from each
case is linked over time and stored as individual-level data in a database at subnational and/
or national levels. HIV case surveillance is referred to in some countries as case notification or
case reporting. The ability to link notifications or reports of sentinel events to a case over time
and maintain data in disaggregated form at the individual level are the distinguishing features
of HIV case surveillance systems.

Many low- and middle-income countries have historically relied on data collected through
patient monitoring systems in health facilities. As described in Chapter 2, data collected
through patient monitoring are aggregated at the facility level before being sent on to higher
levels of the health system. While this system provides reasonably robust estimates of progress
against key indicators, aggregate reporting does not permit collection of individual-level
longitudinal data to monitor programme effectiveness. In addition, because aggregate data
cannot subsequently be disaggregated into individual-level data, it is not possible to detect
duplicate records, resulting in a possible overestimation of the number of people diagnosed
with HIV and accessing services.

Case surveillance methods overcome this limitation by collecting individual-level data from
each person diagnosed with HIV. Using this approach, one person’s report can be distinguished
from another’s (i.e. case records can be “de-duplicated”), and information collected from
different sources and across services and facilities can be linked by name, unique identifier
code only or other person-specific variables. Fig. 1.2 shows the various data sources that can
contribute to monitoring the HIV epidemic in a HIV case surveillance system.

The guidance in this chapter aims to help countries roll out or strengthen HIV case surveillance.
Strengthening existing HIV surveillance systems may involve adding the reporting of HIV
diagnosis to an existing AIDS case reporting system, adding the reporting of additional sentinel
events to a system that only reports new HIV diagnoses and deaths, extending a system to
include sentinel paediatric or pregnancy-related events, or collecting more detailed information
about a specific sentinel event, such as the suspected mode of HIV transmission at diagnosis.

As with other infectious diseases, surveillance of HIV requires an ethical, legal and policy
framework, standardized case definitions for adults and children, reporting procedures and
documents, a data management system, security and confidentiality requirements, and data
analysis and dissemination plans. The following sections of this chapter discuss each of these
concepts in turn.

The guidance in this chapter is supplemented by an online implementation tool (Annex 3.1.)
that describes the building blocks of an effective HIV case surveillance system, provides
step-by-step operational guidance to assessing current surveillance systems, and planning
and implementing new or upgraded systems.

8. Invest in data systems and ensure interoperability. Countries should invest
in robust and secure data systems. As this is done, strengthen the interoperability
of electronic databases and elect open-source standards for data systems.
WHO recommends that 5–10% of programme budgets be used to strengthen
monitoring and evaluation.

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ISBN 978-92-4-151263-3

For more information, contact:

World Health Organization
Department of HIV/AIDS
20, avenue Appia
1211 Geneva 27
Switzerland

Email: [email protected]

www.who.int/hiv

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