This blog is closed to new posts due to inactivity. The post remains here as part of the network’s archive of useful research information. We hope you'll join the conversation by posting to an open topic or starting a new one.
 
As part of a new initiative, Global Health Trials will be running an 'issue of the month', where we will discuss a pertinent issue within clinical research. This month, we are talking about Disease/Demographic Surveillance Systems. Tell us about your experiences!
 
Surveillance Systems are maintained by many clinical research sites, and we are keen to hear about how you work with your local community to track local disease prevalence, births and deaths, to aid trial participation, and so on. How large an area do you track? How do you monitor this area - how often and whom conducts the monitoring? What do you use the data for, and what software do you use to monitor data? How did you start, when the system was initiated? How do you manage the community engagement aspect of your DSS system?
 
Please tell us what you think!
 

  • issahtaffa TAFFA ISSAH 12 May 2013

    What is the INDEPTH Network?
    The International Network for the Demographic
    Evaluation of Populations and their Health
    (INDEPTH) Network is an umbrella organization for
    a group of independent health research centres operating
    health and demographic surveillance system
    (HDSS) sites in low- and middle-income countries
    (LMICs). Founded in 1998, it brought together a
    number of existing HDSS sites, and since then has
    encouraged newer HDSS sites to join.1
    The purpose of this Editorial is to set the scene for a
    series of profiles from INDEPTH HDSS member sites,
    the first examples of which are published in this edition
    of IJE.2–5 All these profiles will follow a set pattern,
    to facilitate a systematic understanding of the multiplicity
    of HDSS sites involved in the Network and the
    various ways in which they are operated by their parent
    institutions. This Editorial therefore, follows the same
    general pattern as the individual profiles, but seeks to
    explore the epidemiological basis on which the HDSSs
    operate in general, and the role of the Network, rather
    than dealing with site-specific issues.
    At the central level, the INDEPTH Network operates
    from its base in Accra, Ghana, as an international
    NGO and is also registered as a not-for-profit entity
    in the USA. The emphasis on the Network’s position
    as a Southern-led and -based organization was an
    important founding tenet, and this is very welcome
    in a world where vestiges of colonialism still occasionally
    surface in relation to health data and policy.
    Day-to-day operations are led by the Executive
    Director (O.S.), and governance and oversight are provided
    by an international Board of Trustees and a
    Scientific Advisory Committee (chaired by P.B.).
    Why was the INDEPTH Network
    set up and what does it cover
    now?
    The raison d’eˆtre behind the emergence of the Network
    was the apparently intractable lack of reliable
    population-based data on health across many LMICs
    in Africa, Asia and Oceania. Recognizing that there
    are no quick fixes in terms of achieving universal individual
    registration of populations in LMICs,6 the
    Network represents a medium-term attempt to break
    the link between material and data poverty.7
    Epidemiology in many LMICs suffers from a dual
    lack of reliable population data and human capacity
    to make use of them. The immediate consequence is
    that health policy making often lacks its essential evidence
    base, with the possible effect of failing to use
    scarce resources effectively in some of the world’s
    poorest countries.
    There are considerable global disparities in terms of
    epidemiological research output per population.
    Figure 1 shows the countries of the world shaded
    by a crude measure of this, namely the number of
    PubMed hits for a search on (‘epidemiology’ and
    <country4) per 1000 population. Much of Africa
    and Asia falls under the level of 0.05 per 1000, corresponding
    to rates which represent less than onetwentieth
    of some of the world’s leading countries
    in terms of epidemiological output. Superimposed on
    the map in Figure 1 are the current 43 HDSS sites run
    by 36 member centres of the INDEPTH Network.
    Although the locations of these sites are somewhat
    serendipitous, rather than being strategically planned,
    it is evident that there is considerable coverage
    across the areas of the world that lack substantial
    This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/
    by-nc/3.0), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
    Published by Oxford University Press on behalf of the International Epidemiological Association
     The Author 2012; all rights reserved.
    International Journal of Epidemiology 2012;41:579–588
    doi:10.1093/ije/dys081
    579
    Downloaded from http://ije.oxfordjournals.org/ by guest on April 30, 2013

    Where are the INDEPTH HDSSs?
    From the outset, the INDEPTH Network has operated
    by accepting as members already functioning independent
    health research centres that run HDSSs.
    Therefore, the Network has little influence over the
    locations or geographical distribution of member
    HDSS sites. However, since the concept of an HDSS
    would be somewhat irrelevant in countries with universal
    population registration, in practice there is
    self-selection of site locations in places where the
    lack of other reliable population-based data justifies
    the considerable effort involved in launching an
    HDSS. As is evident from Figure 1, this means that
    HDSS sites are located across Africa, Asia and
    Oceania, but by no means randomly. Several countries
    contain multiple HDSS sites, whereas many epidemiologically
    poor countries contain none.
    What populations are covered by
    the HDSSs and how are they
    followed up?
    HDSSs set out to collect epidemiological data (risks,
    exposures and outcomes) within a defined population
    on a longitudinal basis. In terms of Pearce’s classification
    scheme for epidemiological study designs,8 this
    places HDSSs as representing ‘the most comprehensive
    approach since they use all of the available information
    on the source population over the risk period’.
    Unlike many epidemiological study designs, in
    which study participants are somehow selected to represent
    particular population subgroups, HDSSs generally
    set out to cover a real-life population and see
    what happens epidemiologically over a period of
    years and even decades. Issues of representativity
    and sampling are nevertheless critical considerations
    for all HDSSs, and need to be considered at the
    outset, when often little is known about potential
    target populations. Many HDSSs have started from
    intentions of covering an area that is at least subjectively
    thought to be typical of wider areas, maybe up
    to national levels. A chicken-and-egg situation arises,
    however, in that the motivation for having an HDSS
    is driven by a recognized lack of population-based
    health data, so that at the outset, very little may be
    known about candidate areas and maybe even less
    about the wider situation. There are no simple solutions
    to this conundrum.
    Even after identifying a target area for an HDSS,
    there are a number of possible design considerations.
    A range of different sampling strategies can be used
    within the target area, that have both epidemiological
    and practical implications.9 In practical terms, one
    important consideration is whether the final population
    is defined as being within a contiguous area or in
    a collection of small areas (e.g. discrete villages)
    within a wider area. This has important logistic implications
    in terms of organizing and maintaining
    on-going surveillance, as well as affecting the definition
    of migration events (see below). The independent
    INDEPTH HDSSs naturally include a mixture of
    approaches to initially identifying target areas, withinarea
    sampling and population contiguity.
    The overall size of the population within an HDSS is
    a further important factor, as is the case in any epidemiological
    study. However, an HDSS is not a classic
    sample survey, and so determining the size of the
    Figure 1 Countries of the world classified by PubMed citations for (‘epidemiology’ and <country4) per 1000 population,
    also showing the location of 43 HDSS site members of the INDEPTH Network (white dots)
    580 INTERNATIONAL JOURNAL OF EPIDEMIOLOGY
    Downloaded from http://ije.oxfordjournals.org/ by guest on April 30, 2013
    target population is not straightforward. Size is of
    course driven by considerations of the rarest
    event(s) of interest, which for most HDSSs are
    mortality-related outcomes. If specific causes of mortality
    are of particular concern, then the overall population
    size needs to be based on numbers relating to
    the nth ranked cause of interest.10 Current INDEPTH
    member HDSS sites range in population size from
    tens of thousands up to around a quarter of a million.
    In most HDSSs the overall numbers are driven by
    mortality outcomes, with the result that surveillance
    of particular more common outcomes (such as morbidity
    and social measures) may in some situations be
    more effectively undertaken using a sample drawn
    from within the overall HDSS population.
    During the life of the INDEPTH Network, the
    technological and methodological possibilities for obtaining
    and using geographical data have advanced
    considerably, to the point where recording the latitude
    and longitude of every residential unit, and
    other salient features, in an HDSS using global positioning
    system (GPS) technology have become
    commonplace.
    Once an HDSS population is defined, an initial detailed
    census is usually undertaken to capture details
    of all residents and the social units in which they live.
    This usually involves assigning unique identifiers to
    all the residents and social units encountered in the
    census, using a numbering system that has sufficient
    capacity for expansion to reflect the addition of future
    residents and social units. It is not simple to arrive at
    generic definitions of social units across cultures and
    traditions, and individual HDSSs have to handle these
    issues in ways that make sense for their own context,
    both for physical structures (housing) and groups
    of inhabitants (families). INDEPTH has tried to standardize
    definitions as far as possible by publishing a
    resource kit for HDSS design on its website. This initial
    census then forms the basis of a database system
    that is updated on a regular basis to reflect the dynamic
    cohort of people living within the HDSS, as
    conceptualized in Figure 2. An important consideration
    is to determine the modality of the regular
    update rounds. Since HDSSs operate by definition in
    populations that are not otherwise enumerated, and
    generally have weak infrastructures, the norm is that
    local staff have to be recruited to undertake regular
    update visits to all the social units in the defined
    area. This forms a major component of the ongoing
    effort of running an HDSS, and consequently issues
    such as the frequency of update rounds need to be
    considered very carefully. Different INDEPTH HDSSs
    use various update frequencies, from one to four
    annual rounds. Certain types of events, e.g. neonatal
    mortality, are likely to be particularly sensitive to
    recall bias, which in turn is related to update frequency.
    Thus, it tends to be the case that more frequent
    updates are needed in high mortality or high
    migration settings, whereas in societies that are more
    stable, or at later stages of demographic transition,
    less frequent updates may prove adequate.
    What is being measured and how
    are the HDSS databases
    constructed?
    Having set up an HDSS, the next challenge is to track
    the progress of the dynamic cohort shown in Figure 2
    by regularly updating a series of core parameters, detailed
    below. Naturally, the operation of an HDSS is
    not confined only to these core activities, and most
    HDSSs will have specific agendas defining what other
    parameters they may need to handle, e.g. in relation
    to the epidemiology of specific diseases, the execution
    of clinical trials, monitoring the effectiveness of
    health systems and other important issues that can
    be built onto the basic HDSS platform.
    Social units
    Keeping track of social units is a challenging issue,
    since it involves both physical structures (that can be
    newly built, in existence or be demolished) and the
    family groups associated with physical structures
    (that can migrate in or out as complete groups, or
    particular individuals can migrate to join or leave a
    group). In some cultures the physical structures may
    be large and complex compounds, perhaps housing up
    to 100 people and possibly containing subunits based
    on a polygamous social structure. At the other end of
    the spectrum, nuclear families may occupy small, discrete
    dwellings. Many HDSSs also aim to gather data
    on socio-economic status, often reflected by a basket
    of parameters including details of the physical structure,
    as well as owning traditional and modern assets.
    Births
    Capturing details of new births is a critical function of
    any HDSS, since births form a major part of new entrants
    to the cohort and are critical to any analyses of
    fertility. In some settings, traditional behaviours
    Dynamic cohort
    (updated through regular cycles)
    time
    Death Out-migration
    ENTRY
    EXIT
    Baseline
    census
    t0
    Dynamic population cohort
    (updated in regular visit cycles)
    Birth In-migration
    Figure 2 Conceptual structure of the dynamic cohort
    model used by INDEPTH Health and Demographic
    Surveillance System (HDSS) sites
    THE INDEPTH NETWORK 581
    Downloaded from http://ije.oxfordjournals.org/ by guest on April 30, 2013
    around childbirth (e.g. going to stay at the maternal
    grandmother’s residence for the birth and neonatal
    period) may make births more difficult to record accurately.
    There is a particular difficulty around detecting
    early neonatal deaths, and separating these
    reliably from intra-partum stillbirths, and this becomes
    more difficult with less frequent update
    rounds.
    Migrations
    Tracking details of migration patterns is one of the
    most complex areas in HDSSs, fundamentally comprising
    people moving into the surveillance area,
    within the area and out of the area. Many of these
    complexities are reflected in INDEPTH’s monograph
    on migration.11 Every type of migration needs to be
    defined by rules (involving duration, intent, destination,
    etc.) which are appropriate to the population
    concerned. Some communities experience regular
    patterns of seasonal migration, related to employment
    or agricultural production. The possibility of multiple
    moves per individual over a period of time must be
    incorporated, and a further challenge can be the reliable
    re-identification of an individual on in-migration
    as being the same person who previously moved out.
    The design of an HDSS site in terms of the contiguity
    of the surveyed population is also important, since
    local moves in a non-contiguous population may be
    classified as in- and out-migrations, whereas similar
    moves in a contiguous area would amount to
    within-site migrations.
    Deaths
    Deaths, documented by age and sex, are a critical
    outcome measure for every HDSS and, in addition
    to reporting basic mortality rates, are an essential
    component in formulating life tables and other demographic
    measures for HDSS populations. As noted
    above, one of the most difficult issues involves reliably
    identifying early neonatal deaths.
    Causes of death
    Identifying the causes of death is a much more difficult
    issue in populations where most deaths do not
    occur in health facilities. The only realistic approach
    to attributing the cause of death is by carrying out
    verbal autopsy (VA) interviews with relatives or caretakers
    of deceased individuals, and then using those
    data to arrive at a likely cause of death. The INDEPTH
    Network was closely associated with developing a
    WHO standard instrument for VA interviews.12 In
    many HDSSs, interpretation of the VA data was
    done by giving the VA data to local physicians,
    often more than one per case, in order to arrive at a
    consensus cause. However, this is an expensive and
    time consuming process that is gradually being superseded
    for most purposes by the application of
    computer-based probabilistic models.13 INDEPTH is
    currently part of a new round of VA tool development
    in conjunction with WHO, which aims to simplify and
    shorten the VA process, as well as moving the scope
    of VA beyond research settings into non-enumerated
    populations.
    Databases
    Maintaining a database that reflects all the details of
    the population in a dynamic cohort is one of the most
    demanding tasks for most HDSSs, and a range of different
    approaches are used. The longitudinal nature of
    the HDSS data demands the use of relational database
    management systems (RDBMS) to handle the
    considerable volume of data involved over long periods
    of time. The basic principles of implementing an
    RDBMS for an HDSS have not changed fundamentally
    since the 1980s, when one of the longeststanding
    INDEPTH member HDSS sites made the
    transition to an RDBMS system.14 However, appropriate
    hardware and software resources have progressed
    through several generations of development in the
    meantime, and that is reflected in the current range
    of implementations across the INDEPTH Network.
    These include implementations built on proprietary
    RDBMS systems such as Microsoft FoxProTM,
    Microsoft AccessTM and Structured Query Language
    (SQL), as well as generic systems made available for
    the use of HDSS sites, such as the Household
    Registration System from the Population Council,15
    subsequently re-engineered as the paperless SQLbased
    ‘Open-HDS’. As commercial hardware and software
    specifications move on (e.g. Microsoft’s decision
    to cease supporting FoxProTM), long-term HDSS operations
    are sometimes forced to migrate their database
    operations onto new platforms, which is not a trivial
    matter for long-term databases linked to live
    surveillance.
    Ethical issues
    Running an HDSS over a long period raises a range of
    ethical issues that are different in some respects from
    those pertaining to many epidemiological studies. In
    the first place, the core HDSS data on vital events that
    are routinely collected in an HDSS population tend to
    be considered as research data, and subject to research
    ethics approval and informed consent, even
    though in countries that implement universal vital
    registration, it is regarded as a civic duty or even a
    legal obligation to provide such data. But, however
    population data are viewed, there are essential standards
    of confidentiality and anonymity that must be
    safeguarded. In HDSS data, there are three particularly
    critical types of data in this respect. Individual
    identities (whether by name or some other identifier)
    have to be protected at all stages of the process—from
    field interviewers observing adequate standards of
    confidentiality through database systems (and their
    backups) being held securely, to not revealing identifiers
    in any data sharing or outputs. Closely coupled
    582 INTERNATIONAL JOURNAL OF EPIDEMIOLOGY
    Downloaded from http://ije.oxfordjournals.org/ by guest on April 30, 2013
    with this, since HDSSs now commonly collect the
    GPS locations of households, it is important to also
    regard these data as confidential, since in principle
    they can be used to identify and locate households,
    and thereby their residents. Anonymizing GPS data is
    a much more difficult issue than simply removing
    names from a database.16 Third, HDSS databases typically
    accumulate a large volume of personal, often
    medical, data (such as HIV status) that are sensitive
    and must be kept confidential.
    Key findings and publications
    Outputs from the INDEPTH Network mentioned here
    comprise those that are based on data from more
    than one HDSS site, or which make external comparisons.
    The individual HDSS site profile papers will provide
    further details of site-specific outputs. The
    INDEPTH Network website (www.indepth-network.
    org) provides information about the Network, its
    organization and current activities.
    One of the clear strengths of a network such as
    INDEPTH is its potential to collate data from
    member HDSS sites into outputs that enable systematic
    comparisons to be made. The first major
    INDEPTH output was a monograph published in
    2002 that outlined basic HDSS concepts and gave details
    of 22 HDSS site members at that time.17 Two
    further monographs relating to health equity in
    small areas18 and migration11 followed in 2005 and
    2009, respectively. In a different format, using a supplement
    in an open-access journal, three sets of
    multi-site papers were published in 2009–10. The
    first related to cross-site findings on noncommunicable
    disease risk factors from a group of
    INDEPTH member HDSS sites in Asia.19–27 The
    second related to mortality clustering across a range
    of INDEPTH member HDSS sites28–36 and the third to
    results from eight INDEPTH member HDSS sites,
    which participated in the WHO–SAGE programme
    on ageing.37–46 The latter Supplement represented an
    innovation for the INDEPTH Network with the combined
    dataset used for the analyses also being published
    online together with the papers. Publications
    based on these public-domain data are now
    emerging.47
    A number of other papers have considered particular
    issues at the Network level.48–53 In addition, there
    have been some outputs that have involved inter-site
    collaborations but not included wide representation
    across the Network.54–59 In some cases, multiple
    INDEPTH members are also members of other research
    networks such as the RTS,S Clinical Trials
    Partnership60 and the Alpha Network.61 Several
    other studies have made comparisons between HDSS
    data from single INDEPTH HDSS sites and other
    sources.62–65
    Future analysis plans
    As well as the substantial and continuing volume of
    outputs from individual HDSS sites, the INDEPTH
    Network will continue to produce multi-site outputs
    in particular topic areas. Current priorities include
    comparative assessments of fertility and cause-specific
    mortality patterns, as well as retrospective analyses of
    HDSS data against correspondingly timed weather
    data, which offer insights into the possible future
    population effects of changes in climatic conditions.
    Strengths and weaknesses
    HDSS sites represent an inherently strong epidemiological
    design, giving considerably greater analytical
    scope than can be achieved from e.g. cross-sectional
    approaches. However, the resources required to run
    an HDSS effectively are very considerable, particularly
    since the greatest gaps in health data are generally
    found in more logistically challenged environments.
    Not least this makes it very difficult for many HDSS
    sites to recruit and retain highly competent personnel,
    particularly those with experience in database management
    and epidemiological analysis, with the result
    that HDSS sites sometimes find it difficult to maximize
    their outputs.
    A recurrent issue that arises in considering HDSS
    data is how the site populations are, or are not, representative
    of the wider surrounding populations.
    Although this does not pose any technical issues in
    terms of analysing data within an HDSS site, it is of
    concern when it comes to interpreting HDSS data into
    wider epidemiological and policy arenas. There are no
    simple solutions to this issue, since HDSSs are always
    located in places where little is known about the surrounding
    population. It is possible to make comparisons
    with other data sources, such as national
    censuses and cluster sample surveys,62–65 but these
    sources come with their own disadvantages such as
    greater recall bias, and hence it is very difficult to
    attribute causes to observed differences. An empirical
    investigation into this issue used Swedish national
    data from 1925, a time when Sweden shared many
    characteristics with contemporary LMICs.66 This
    showed that the majority of individual counties
    could have been taken as adequately representative
    of the national population, and the less representative
    counties were self-evidently so (including the capital
    city and the most remote regions). Although this does
    not offer any absolute evidence about the representativity
    of INDEPTH member HDSS sites, it suggests
    that it is not reasonable to assume by default that
    HDSS populations are unrepresentative.
    The diversity observed across the INDEPTH member
    HDSS sites is a further source of both strength and
    weakness. As discussed earlier, there has never been
    any master plan for establishing HDSS site.
    My aim here is to describe the essential nature of the
    INDEPTH Network as a background to detailed profiles
    of constituent member HDSS sites. Although all
    those sites have important differences, the huge
    volume of detailed individual data generated across
    Africa, Asia and Oceania by the Network constitutes
    a unique resource of great value to demographers,
    epidemiologists and health planners.

  • gomez12 gomez12 15 Oct 2012

    I read the above comments with interest since I need to set up a DSS at a new site, so have a lot to learn. In searching for information, I came across this paper about setting up a DSS in Burkina Faso, so I thought I'd share it with everyone: http://ije.oxfordjournals.org/content/41/5/1293.long

    I'd be interested to hear anyone else's experiences too!

  • Korogwe Health and Demographic Surveillance System (HDSS) covers 14 villages in Korogwe district, Tanga Region, north-eastern Tanzania. It is coordinated by National Institute for Medical Research (NIMR), Tanga Centre.

    The primary aim of the Korogwe HDSS is to generate health and population related information in an area without a system for routine collection of vital events. It also to generate data for planning and evaluating clinical trials and other interventions which are either currently being or will be undertaken in this platform. Priority areas are malaria, HIV/AIDS, TB and Health system research.

    Prior to its establishment, village selection was done in October 2005 followed by meetings with village leaders and the entire community to obtain community consent for participation in the study. Thereafter, a baseline census was conducted using field workers (enumerators) who were recruited from the same area as part of community engagement and participation. The enumerators were trained on how to conduct interviews and fill in the information in baseline census questionnaires and other study tools. The baseline census which was conducted in November 2005 helped to obtain background information of the study population before a longitudinal surveillance system was established in January 2006.

    Routine updates of demographic data including deaths, births, changes in marital status, and migration is done 3 times annually.

    Verbal autopsies are conducted to establish the causes of deaths /reported through regular HDSS rounds. In collecting such data, a VA questionnaire is usually administered to parents/close relatives of the deceased / within a period of 2 - 6 weeks from the date of death by a trained field worker Other research activities undertaken in this platform included: Social economic status and coverage of expanded program on immunization (Epi-coverage) which were assessed between January and April 2006 and Malariometric surveys in the 14 villages between October 2006 and June 2007. Monitoring of malaria febrile illness in the community is ongoing since January 2006, where a passive case detection of cases using Community-owned Resource Persons residing in the same areas is implemented in six of the villages.

    Management of HDSS data is done using HRS2 software for demographic data and Microsoft Access for other types of data. The databases are linked by a unique identifier which is a HDSS personal identification number.

    Supervision of field activities involves regular visits by a supervisor, surprise visit by the supervisor and/scientist, accompanied interviews (field worker conducts interviews in the presence of a supervisor/scientist), re-interviews (revisiting the household by the supervisor to re-interview the respondents), monthly meetings and training at the end of each round.

    By December 2012, the HDSS area is expected to expand to cover 36 more villages with estimated population of over 63,000, which will bring the number of villages to 50 and a population of over 91,000 people.

  • kclspansis Sisira Siribaddana 12 Aug 2012

    Demographic surveillance system tracks births, deaths and migration. This is different from disease surveillance systems.
    Sri Lanka (SL) has excellent birth and death reporting system with more than 95% of deliveries happening at hospitals.
    We used DSS in three instances.
    1. To built up adult population based twin registry in the most populous district in SL
    2. To get the data about twin births in SL
    3. To assess health of left behind families of migrating workers.

    will discuss this in detail in the next blog