Unit 1: Introduction to the course and to behavioural surveillance

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Unit 1 Introduction to the course and to
behavioural surveillance
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Purpose and objectives

• To improve the capacity of countries to implement
  high-quality and sustainable behavioural
  surveillance by providing those involved with
  surveillance with the theory, methods and
  hands-on experience they need to help design and
  implement behavioural surveillance.

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The course aims to enable you to

1. Outline the use of behavioural surveillance data
   and the steps in developing surveillance systems
2. Select and adapt indicators, instruments and
   methodologies to track changes in HIV risk
   behaviours
3. Select and apply appropriate sampling
   methodologies for monitoring HIV risk behaviours
4. Ensure behavioural surveillance data is used by
   understanding how to analyse and present data for
   different audiences
5. Understand the ethical considerations involved
   in conducting behavioural surveillance
6. Conduct pre-surveillance activities to help
   develop an appropriate behavioural surveillance
   plan

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Course structure
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Introductions

1. Introduce yourself
2. Tell us a bit about your experience and your
   interests in behavioural surveillance
3. What are your expectations for this course?

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• Introduction to behavioural surveillance

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After completing this unit you should be able to

• Define surveillance
• Outline the uses of behavioural surveillance
• Outline issues to consider when designing a
  surveillance system
• Outline the steps required to achieve a
  sustainable surveillance system

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What is surveillance?

• Surveillance is the systematic, regular, ongoing
  collection and use of data for public health
  action.
• HIV/AIDS surveillance can be divided into
  biological and behavioural surveillance.
• Behavioural surveillance involves regular and
  repeated cross-sectional surveys collecting data
  on HIV risk behaviours and other relevant issues
  that can be compared over time.
• Biological surveillance also involves regular and
  repeated cross-sectional surveys, but collects
  biological samples that are tested for HIV and
  other related illnesses, such as STIs and TB.

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The uses of behavioural surveillance

• To provide an early warning about which groups
  and areas infection is likely to spread in and
  between
• To explain changes in HIV prevalence over time
• To provide information for developing prevention
  programmes by identifying the populations and
  behaviours that are driving the epidemic
• To monitor and evaluate the impact of prevention
  programmes
• 5. To reinforce the findings of biological
  surveillance
• To raise the awareness of HIV among policy-makers
  

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• Note on using behavioural
• surveillance for evaluation
• Unless questions on exposure to specific
  interventions are included, surveillance only
  provides evidence for the impact of programmes as
  a whole. Exposure questions should not be added
  if they deflect the focus of surveillance from
  detecting and measuring risk behaviours.
• Like most evaluation methods, surveillance does
  not provide conclusive evidence that the
  programme caused any observed changes in
  behaviour.

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Issues to consider when designing a behavioural
surveillance system
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Issue 1 Whom to include

• What state of the epidemic is your country in?
• Low-level Prevalence is consistently below 5 in
  any high-risk group and below 1 in the
  general population.
• Concentrated Prevalence of HIV has surpassed 5
  on a consistent basis in one or more high-risk
  groups, but remains below 1 in the general
  population.
• Generalised Prevalence of HIV has surpassed 1
  in the general population.

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Whom to include in surveillance for each state of
the epidemic
State of the Epidemic Biological (annually if feasible) Behavioural
Low-Level High-risk groups High-risk groups annually, general population every 3-5 years
Concentrated High-risk groups, general population High-risk groups annually, general population every 3-5 years
Generalised High-risk groups, general population High-risk groups annually, general population annually
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• Why survey risk groups in a generalised epidemic
  if everyone is at high risk?
• Even in a generalised epidemic, not everyone is
  at equal risk of developing HIV or has an equal
  role in the spread or maintenance of the
  epidemic.
• It is important to identify and monitor
  sub-populations who help drive the epidemic.

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• Why survey the general population in a
  concentrated epidemic if they are low-risk?
• General population surveillance helps us
  understand the potential for HIV to spread beyond
  the groups in which it is concentrated by
  allowing us to explore
• The size of the risk groups
• The links between the risk groups and the general
  population
• The level of risk behaviour in the general
  population

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Thinking beyond the guidelines

• Although these general guidelines are very
  useful when deciding whom to include in
  surveillance, they have limitations.
• Question Look at the following map. What do you
  see in terms of the classification of the
  epidemic?

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Patterns of HIV Epidemics in the World, 2001
State of the epidemic
Generalised gt 1 HIV prevalence among
pregnant women
Concentrated gt 5 HIV prevalence among high risk
groups, but lt 1 among pregnant women
Low Level lt 1 HIV prevalence among high
risk groups
No Data
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Issue 2 Where to access the surveillance
population

• The populations included in surveillance can be
  accessed either in sentinel site or in the
  community.
• Question What do we mean by sentinel and
  community-based surveillance?

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Issue 2 Where to access the surveillance
population, cont.

• Sentinel surveillance is often more convenient,
  cheaper and has fewer ethical implications than
  community-based surveillance.
• People at sentinel sites are self-selected, so we
  do not know whom they represent or how the
  population changes over time.
• When community-based surveillance uses rigorous
  sampling techniques, the people whom the sample
  represent can be clearly defined.

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• Issue 3 How to link behavioural and biological
  data
• Behavioural data are important for interpreting
  biological data over time.
• To ensure data are complementary and useful,
  biological and behavioral surveillance are best
  planned together.
• Planning should include how the data can best be
  linked.

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What do we mean by linking?

• Collecting HIV, STI and behavioural data from the
  same individuals at the same time.
• Collecting HIV, STI and behavioural data from the
  same source population at different times.
• Analyzing HIV, STI and behavioural data from a
  similar source population, using whatever data
  are available.
• Reporting behavioural and biological surveillance
  together.
• The decision about how data should be linked
  should be country-specific.
• Whatever type of linking is used, remember it is
  only possible to link trends over time. Data from
  a single point in time cannot be linked.

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Issue 4 How to ensure that surveillance is
appropriate for the context

• There are broad guidelines on how to do
  surveillance for different stages of the
  epidemic.
• However, there is no one size fits all way of
  designing a surveillance system.
• The surveillance system needs to be designed to
  fit the specific features of each countrys
  epidemic. The things that we discuss in this
  training are not ruleseverything will need
  modifying to fit the countrys needs.

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An overview of the steps for conducting
surveillance
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Step 1 Identify a co-ordinating body

• Purpose to provide guidance and serve as an
  over-all decision-making committee for the
  surveillance system, to ensure that the
  surveillance system collects appropriate data
  that allows trends to be measured and to inform
  policy.
• The committee should be convened by the ministry
  of health, and should include national and
  international bodies whose interests are served
  by surveillance.

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Step 1, continued

• Responsibilities of the committee
• To define the purpose of surveillance
• To ensure that surveillance is set up to meet
  the countrys data needs
• To identify funding sources
• To advocate about the importance of surveillance
• To facilitate co-ordination between surveillance
  partners
• To make final decisions about surveillance
  populations and areas
• To monitor the progress of the surveillance
  process
• To provide input into data interpretation and
  conclusions
• To maximise data dissemination and use

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Step 2 Agree on the purpose of surveillance

• Purpose to ensure that stakeholders have similar
  ideas about the purpose and practicalities of
  surveillance.
• Step 3 Establishing criteria for selecting
  populations and geographic coverage areas
• Purpose to ensure that surveillance populations
  and geographical areas are selected based on
  their epidemiological importance.

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• Step 4 Gather information to select populations
  geographic areas and to guide survey
  implementation
• Purpose to collate and collect data required to
  select populations and geographical areas.
• 1. Review previous research to assess what is
  currently known about the epidemic
• 2. List potential surveillance populations and
  geographic hot spots
• 3. Conduct field assessments as needed

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• Step 5 Finalise selection of sub-populations
  geographic areas for surveillance
• Purpose to ensure that the information reviewed
  and collected is synthesised and used by the
  surveillance committee.
• Step 6 Develop sampling design
• Purpose to ensure a sampling design that is
  appropriate for the surveillance population and
  results in the collection of unbiased and precise
  estimates.

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• Step 7 Develop survey protocol (See table 1.4
  for suggested content)
• Purpose to ensure that all surveillance
  elements are considered and planned for and to
  ensure that procedures are documented, so the
  system uses consistent methodologies over time.

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• Step 8 Build sampling frame
• Purpose to generate a list of units from which
  the sample can be selected if required.
• Step 9 Conduct surveillance
• Purpose to carry out the surveillance protocol.

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• Step 10 Analyse and use data
• Purpose to analyse data appropriately and
  present/disseminate it in a manner that
  facilitates its use.
• Step 11 Plan for next round of surveillance

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Small group discussion

• How is surveillance organised/co-ordinated in
  your setting? What works and doesnt work in the
  organisational structure?
• Look at the diagram on the next slide. This
  diagram was developed using behavioural
  surveillance data from the areas in Asia where
  the majority of epidemics are concentrated. The
  diagram helps us understand what behaviours are
  driving the HIV epidemic, the size of high-risk
  groups and their links to the general population.
  The ovals show the different population groups
  and their sizes the arrows show the links
  between the populations and the strength of the
  links. Describe how you could use the information
  shown in the diagram in your country.

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Data from behavioural surveillance in Asia
Clients of FSW 5-20 of population
FSW 0.3-1 of population
Low or no-risk males
IDUs 0.1-5 of population
MSM 2-3 of population
Low or no-risk females
Source Tim Brown, East West Center
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Case Study

• When discussing guidelines for whom to include in
  surveillance for each epidemic state, what do we
  mean by the general population and by
  high-risk group surveillance?
• Are commercial sex workers a high-risk group?

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Key references

• FHI et al (2000). Behavioral surveillance
  surveys Guidelines for repeated behavioral
  surveys in populations at risk of HIV. Arlington,
  FHI.
• FHI et al (in press). The pre-surveillance
  process Guidelines for planning HIV surveillance
  systems
• UNAIDS (2002). Initiating second generation HIV
  surveillance systems practical guidelines. WHO
  UNAIDS Geneva,
• WHO (2001). Guidelines for conducting HIV
  behavioral surveillance. WHO, SEA-AIDS-123 New
  Delhi.