HIV data : monitoring implementation of the Dublin Declaration on partnership to fight HIV/AIDS in Europe and Central Asia : 2014 progress report.
Date: 2015-12-21
Institutions: European Centre for Disease Prevention and Control
Subjects: AIDS, Central Asia, Europe, data collection, data processing, disease prevention, infectious disease, medical research, public health, sexually transmitted disease

ECDC EVIDENCE BRIEF 

September 2015 

HIV data 

Monitoring implementation of the Dublin Declaration on partnership to fight 
HIV/AIDS in Europe and Central Asia – 2014 progress report 

Dublin 
Declaration 

This ECDC evidence brief 
summarises key issues 
and priorities for action 
in Europe. It draws on 
country data reported to 
ECDC for Dublin 
Declaration monitoring 
and UNAIDS global 
reporting in 2012 and 
2014 and surveillance 
data reported by 
countries to ECDC and 
WHO Europe since 2004. 

Following ECDC’s 2010 
and 2012 progress 
reports, a new series of 
thematic reports and 
evidence briefs present 
the main findings, 
discuss key issues, and 
assess the progress 
made since 2012 in 
Europe’s response to 
HIV. 

What are the concerns about 
HIV data?  

Good data are essential for effective public health planning and action. Lack of 
critical HIV data weakens the ability of countries across the region to plan, 
implement and monitor their responses to the epidemic. Three strategic areas are 
particularly problematic: 

•  State of the epidemic (e.g. HIV incidence, HIV prevalence, co-infections) 
•  State of the response (e.g. testing uptake, late diagnosis, treatment access, 

adequacy and tracking of funding, efficacy of interventions) 

•  Key populations (e.g. demographics, risk behaviours, factors that influence risk 
and uptake of services, subpopulations at increased risk, overlapping risk 
behaviours)  

With HIV and health budgets under pressure and an increasing focus on evidence-
based decision-making, high-quality data on these aspects of the HIV situation are 
essential. 

What are the main challenges in 
Europe? 

Data availability 

Data required for evidence-based decision-making are often not 
complete. Multiple rounds of reporting on the implementation of the Dublin 
Declaration have highlighted significant and wide-ranging gaps in the data that are 
available in countries for use in tracking and improving their HIV response. Many 
of the gaps revolve around the populations that are most affected by HIV, 
including men who have sex with men (MSM), migrants, people who inject drugs, 
and sex workers. The gaps are even more significant for subgroups of these 
populations who are at the greatest risk of acquiring or transmitting HIV. In 
addition, a high percentage of countries in the region report major data gaps 
related to key aspects of the continuum of HIV care: 57% do not have data to 
estimate the true number of people who are HIV infected; 36% do not have data 
on the number of people retained in care; and 39% do not have data on the 
number of people who have an undetectable viral load.  

Suggested citation: European Centre for Disease Prevention and Control. Evidence brief: HIV data. Monitoring implementation of 
the Dublin Declaration on partnership to fight HIV/AIDS in Europe and Central Asia – 2014 progress report. Stockholm: ECDC; 
2015. 

© European Centre for Disease Prevention and Control, Stockholm, 2015 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
Figure 1: Missing crucial data on HIV in EU/EEA 
countries 

57%

of countries
have no data to 
estimate the 
true number of 
people who are 
HIV infected

36%

of countries
have no data on 
the number of 
people retained 
in care

39%

of countries
have no data on 
the number of 
people who 
have an 
undetectable 
viral load

There is a significant lack of behavioural data 
for key populations. Few countries in the region 
report having current and representative behavioural 
data that can be used to improve key aspects of the 
response, particularly the targeting of prevention 
programmes. For example, only 10 EU/EEA countries 
report having data on risk behaviours in MSM 
subgroups at increased risk of HIV infection; only 
seven countries report having data on risk reduction 
behaviours among MSM; and only five countries 
have data on both risk behaviours and risk reduction 
behaviours.  

Behavioural data to capture changing patterns 
of risk behaviour are not collected on a regular 
basis. The findings of the 2010 comprehensive 
European MSM Internet Survey (EMIS)1 provided 
valuable insights. However, the survey has not been 
repeated, so the data are now five years old. No 
similar regional or large-scale surveys for other key 
populations have been conducted in recent years. 

Most countries are not able to estimate the 
percentage of HIV funding allocated to 
prevention or treatment. Only 41% of the 
countries in the region can estimate the percentage 
of HIV funds allocated to prevention; only 48% can 
estimate the percentage allocated to treatment. If 
countries want to improve the efficiency and cost-
effectiveness of their HIV responses, they need more 
robust mechanisms to monitor how funds are 
allocated and spent. 

There are limited data in a wide range of 
programmatic areas. These areas include 
coverage, uptake, performance, effectiveness, and 

1 The EMIS Network. EMIS 2010: The European Men-Who-
Have-Sex-With-Men Internet Survey. Findings from 38 
countries. Stockholm: European Centre for Disease 
Prevention and Control, 2013. 

2 

impact of HIV services. For example, only four 
countries report having data on the number of cases 
detected by HIV testing services in MSM subgroups 
at increased risk of HIV infection. Better monitoring 
can improve data on some aspects of services, but 
addressing more than just a few gaps will require a 
long-term commitment to special studies, rapid 
assessments, and formal evaluations. 

Table 1. Percentage of EU/EEA countries reporting 
critical data gaps on the uptake of HIV testing 
among key populations 

Percentage   Key population 

46% 

71% 

71% 

80% 

MSM overall 

MSM subgroups at increased risk of HIV 
infection 

Migrants in general 

Undocumented migrants 

Data comparability 

Data on the same topics are collected 
differently in different countries, which makes 
it difficult to compare findings. The various 
programmes, projects and studies within a country 
have different strategies, protocols and approaches 
for collecting data. Variations in data collection 
methodology, time frame, sample size, number of 
sites, location, disaggregation, terminology, and 
other factors make it difficult to compare data across 
countries as well as over time. 

Data that may seem comparable can be 
misleading when aggregated. Data from 
different countries on the same topic may at first 
seem comparable, particularly if no contextual data 
are presented. For example, many countries report 
data on the availability and accessibility of HIV 
testing among MSM; these data are collected in 
different ways, with different population sample 
sizes, over different time frames, and in different 
locations/facilities. As a result, the aggregation of 
these data may not accurately portray the situation 
across the region. 

Data quality 

There are no agreed HIV data quality 
standards in Europe. There is growing recognition 
in the region that data quality needs to improve if 
data are to be useful in informing and improving 
national responses to HIV. For example, a lack of 
standards can lead to concerns about the accuracy 
and credibility of the data, which makes it difficult to 
assess the performance of programmes and 
projects. In addition, concerns about the quality of 
the data can reduce their influence on policymakers 
and programme planners. Inconsistent data quality 
in the region also limits the ability to accurately 
compare data across countries, which makes it more 
difficult to share lessons learned. 

 
 
 
 
 
                                                                    
 
 
Data utility  

Shared data can provide invaluable lessons on 
the strengths and weaknesses of different 
interventions. The ability to learn from national 
experiences is compromised by the lack of a 
systematic approach to sharing compatible data on 
the performance of HIV interventions. While 
countries do share data on a limited, ad hoc basis, 
there is a significant opportunity to capitalise on the 
utility and value of data on interventions by 
developing robust systems to share these data.  
(Sharing data on the performance of HIV 
interventions must not violate laws and policies 
related to the confidentiality of patient data.) 

What needs to be 
done? 

Decision-makers need data that are meaningful and 
useful. Given the limited resources available in most 
countries for monitoring national HIV programmes, 
the priority should be to collect quality data that 
are meaningful and useful for understanding the 
situation and improving the response.  

Data for reporting to international 
organisations should be drawn from existing 
national datasets. Initiatives to compel countries 
to collect data solely for reporting purposes should 
be reduced or eliminated. In a time of limited 
financial and human resources, international 
organisations should focus on identifying, requesting 
and using data points that are also relevant to the 
reporting country. 

Identify and address priority gaps in data 
about populations and programming that limit 
the ability to make sound, evidence-based decisions 
on the response to HIV. Reporting on the 
implementation of the Dublin Declaration indicates 
that several areas are affected: there are, for 
example, substantial data gaps in behavioural data 
on population subgroups at heightened risk of 
infection. Further gaps exist in crucial programme 
areas, e.g. in uptake of testing, late diagnosis, and 
ART adherence/retention. 

Collect periodic behavioural data on key 
populations to better inform the HIV response. The 
2010 EMIS study clearly demonstrated the value of 
an innovative approach to collecting behavioural 
data in the region. Since the survey was completed, 
countries have continued to use the data to 
understand the epidemic among this population and 
refine their response. A commitment to periodic 
surveys which collect behavioural data on key 
populations would provide countries with much-
needed information on risk behaviours, risk reduction 
behaviours and factors that limit uptake of 
prevention, testing and treatment services. There is 
a parallel opportunity to develop and agree on basic 
standards and protocols for collecting behavioural 
data that will help ensure the quality and 
comparability of data in the region. Opportunities for 
countries to collaborate should also be explored as a 
means to cost-effectively collect and analyse high-
quality data. 

Agree on pragmatic approaches to improve 
the quality and comparability of data on the 
HIV response. There is a pressing need to develop 
and agree on monitoring and evaluation guidance to 
help countries align their data collection strategies, 
protocols and approaches. This guidance would 
improve the quality and comparability of HIV data in 
the region. The guidance should include metrics for 
collecting behavioural data among key populations 
as well as information on data quality standards and 
quality assurance tools to ensure the overall integrity 
of the data. 

Improve systems for sharing data on 
programme performance between countries and 
across government and civil society. This would help 
ensure that key stakeholders have access to critical 
data, which would strengthen their understanding of 
the situation and improve planning, budgeting and 
implementation. 

Focus on collecting data that can and will be 
used. Countries across the region have limited 
resources to collect and analyse data on the HIV 
situation. Consequently, it is essential for countries 
to focus on collecting and analysing data that are 
directly applicable to understanding the situation and 
improving the response. International requests for 
national data should not be a reporting burden for 
countries. International organisations should 
harmonise and minimise their requests for data (e.g. 
coordinated, biennial reporting cycles) and they 
should use existing data whenever possible. In 
addition, they should recognise and respect the 
importance of national and regional relevance when 
requesting and using data. 

Stockholm, September 2015 

ISBN 978-92-9193-669-4 

doi 10.2900/547548 

Catalogue number TQ-01-15-585-EN-N 

© European Centre for Disease Prevention and 
Control, 2015 

Reproduction is authorised, provided the source is 
acknowledged 

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