HealthDataNavigator Understand strengths and weaknesses of existing data bases and projects

EU and International Projects Assessment

EurHOBOP

EurHOBOP, the European Hospital Benchmarking by Outcomes in Acute Coronary Syndrome Processes, was a three-year study initiated in 2009 with the aim to provide European hospitals with a validated set of statistical functions - including determinants of in-hospital case fatality outcome indicator - to benchmark themselves about the quality of management of myocardial infarction (MI) or unstable angina (UA) patients and treatments aimed at removing coronary artery occlusion.

Governance
  • EURHOBOP was a project funded by the European Commission ("Executive Agency for Health and Consumers"), under the Second Programme of Community Action in the Field of Public Health.
  • Main beneficiary of the project is the Municipal institute of Health Assistance – Municipal Institute of Medical Research (IMAS-IMIM), Barcelona, Spain.
  • Contact Person: Ms. Yolanda Ferrer (EURHOBOP Secretariat in the IMIM-Hospital del Mar Barcelona Biomedical Research Park); Phone: +34 933 16 07 10; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Website: www.eurhobop.eu
Coverage
  • Data of a total of 1400 consecutive patients (no control for age or severity restrictions) with discharge diagnosis of MI or UA retrospectively were collected.
  • Letters of discharge, computer records from emergency rooms, computer medical records, medical records on paper, and/or computerized laboratory record were collected from hospitals of 8 EU countries (Belgium, Finland, France, Germany, Greece, Italy, Portugal and Spain).
Output and Results
  • Final report with achieved results and findings is not available ( last check:  03.05.2013)
  • The expected results consist of a set of validated mathematical hospital functions suitable for benchmarking European hospitals by cardiovascular disease management performance and for European citizens to determine their risk of in-hospital death when submitted to these procedures.
  • Therefore several risk functions (GLM multilevel models) with different levels of adjustment, developed in the EUPHORIC DG SANCO project (2004-08), will be validated and new ones will be developed.
Access to Data
  • Data not accessible to public though the website
Data Quality
  • All patients in the EURHOBOP Study  identified by a string code consisting of three elements: Country code, Hospital code, Patient ID.
Linkage
  • No data linkage possible with external data (from outside perspective)
Strengths and Weaknesses Strengths:
  • Study is based on the preliminary results obtained in the EUPHORIC (www.euphoric-project.eu) cardiovascular pilot study.
  • Once the final versions of the benchmarking functions are validated, they will be posted on the project web site together with their results summarized in a downloadable report.
  • Website contains technical reports, however no intermediate or final reports on the outcomes of the project ( last check: 03.05.2013)

 

ISAAC

ISAAC, The International Study of Asthma and Allergies in Childhood, is a unique worldwide epidemiological research programme established in 1991 to investigate asthma, rhinitis and eczema in children. ISAAC findings have shown that these diseases are increasing in developing countries and that they have little to do with allergy. The aim is to develop environmental measures and disease monitoring in order to form a basis for future interventions.

Governance
Coverage
  • Over 100 countries and 2 million children
  • Firstly, large cross-sectional study of 13-14 and 6-7 year olds on asthma, rhinitis and eczema symptoms by written questionnaires.
  • Secondly, smaller, selective studies examined children aged 9-11 years in several assessments and additional questionnaires.
  • Repeating the first steps after at least five years, examining variations in time trends of childhood asthma, rhinoconjunctivitis and eczema around the world, and extension of research groups with an additional “environmental questionnaire” that focussed on risk factors.
  • Finally development and expansion of the website scope as a resource for ISAAC collaborators. It includes the addition of management plans.
Output and Results
  • Ongoing project.
  • Circa 500 published papers. Details of all ISAAC publications can be found on the ISAAC website, together with a search facility to identify publications by title, author, year, ISAAC phase or location.
  • Symptoms and objective measures of asthma and allergy have been related to individual exposure to environmental factors and to genetic markers. Ecological analyses related prevalence of these conditions to characteristics of the populations living in each of the study centres.
Access to Data
  • Findings and large number of publications available on the webpage.
Data Quality ISAAC Toolbox:
  • Instruments used to measure data are accessible and described via manuals on the website.
Linkage
  • No data linkage possible with external data (from outside perspective)
Strengths and Weaknesses Strengths:
  • In many areas of the world, ISAAC provided the first population-based assessment of the prevalence and severity of asthma and allergic diseases among children.
  • Easy accessible and informative website (http://isaac.auckland.ac.nz/)

 

De-PLAN

De-PLAN, Diabetes in Europe - Prevention using Lifestyle, Physical Activity and Nutritional intervention, is a study (2005-2008) which aimed to assess the type 2 diabetes risk in European populations and to implement and evaluate a lifestyle intervention programme for prevention of type 2 diabetes in high-risk individuals.

Governance
  • Project funded by the European Commission under the EU Public Health Programme.
  • Coordinating center is at the University of Helsinki, Department of Public Health, Finland.
  • Contact person: Mr. Jaakko TUOMILEHTO (Project Leader); Phone: + 358 9 4744 8316; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website not available
Coverage
  • 24 partners from 15 countries (Greece, Spain, Germany, Serbia, Austria, Finland, Turkey, Lithuania, Poland, UK, Norway, France, Italy, Bulgaria, Estonia).
  • Cross-sectional population surveys of 18 576 participants from the partner countries (information collected on lifestyle habits and T2D/CVD risk factors).
Output and Results
  • Creation of a data base on lifestyle and risk factors of Type 2 diabetes and CVD from 22 centers throughout Europe.
  • Implementation of a lifestyle intervention program to prevent T2D in the primary care setting under different European cultural and health care settings targeted to high-risk individuals
  • Economic evaluation of lifestyle intervention program in real clinical practice in partner countries
Access to data
  • Data is not available for public use through the website, as the project website does not exist
Data quality
  • DE-PLAN data processing was done with the provided software (by the main partner) to ensure comparability with data from all locations and to enable the final analysis of the DE-PLAN project.
Linkage
  • No data linkage possible with external data (from outside perspective)
Strengths and Weaknesses Strengths:
  • The DE-PLAN project has formed a basis for the IMAGE (http://www.image-project.eu) project, which aim is to develop the European guideline for the prevention of T2D

 

EPIC

EPIC, the European Prospective Investigation into Cancer and Nutrition, is an ongoing study ,initiated in 1992, with the purpose to investigate the relationship between diet, nutrition status, lifestyle and environmental factors and the incidence of cancer and other chronic diseases.

Governance
  • EPIC received funding from the European Commission "Europe Against Cancer" Programme - additionally, each partner received local financial support.
  • Co-ordinating centre: IARC, International Agency for Research on Cancer, Lyon, France
  • Contact Person: Dr. Nadia Slimani- group head of the Dietary Exposure Assessment Group. E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Website: http://epic.iarc.fr/index.php
Coverage
  • EPIC is the largest study of diet and health in Europe (10 countries: Denmark, France, Germany, Italy, the Netherlands, Norway,Greece, Spain, Sweden and the United Kingdom) with 521,000 participants
  • Recruitment of participants was principally from the general population aged 20 years or over: patient-level data
  • Carefully designed and tested questionnaires were used to study differing diets in participating countries, anthropometric measurements, blood samples
  • Three dietary methods were adopted: a self-completed dietary questionnaire, an interview-based dietary questionnaire or a food frequency questionnaire (FFQ, where the participants estimate their average frequency of intake of a list of foods over the previous 12 months) combined with a seven-day record (diary). The questionnaires contained common diet and lifestyle questions across each centre (core questions) and some additional centre-specific questions, which reflect particular interests of individual scientists.
  • Information on diet, lifestyle and health condition of project participants
Output and results
  • Detailed description of key findings of the project and future plans on website (http://epic.iarc.fr/) such as the incidents of tumours by major cancer sites for EPIC study population, 2004
  • Successful follow-up of the 521,000 subjects enrolled in the EPIC cohort, with little loss to follow-up during this time period, and the identification of over 26,000 incident cases and nearly 16,000 deaths.
Access to data
  • Overview data accessible from cohort studies on project webpage.
  • The master EPIC database is hosted by IARC, which is responsible for the maintenance of the individual (dietary, lifestyle) and follow-up data (cancer, mortality and other endpoint data) collected from the different participating centres.
Data quality
  • To ensure the comparability of dietary measurements obtained from questionnaires a specially designed computer program (EPIC-SOFT) was developed.
Linkage
  • No data linkage possible with external data (from outside perspective)
Strengths and Weaknesses Strengths:
  • It is planned to follow-up the study participants for the next 10 years at least, continuing to study the role of nutrition and lifestyle in cancer development and other chronic diseases.
  • In September 2001 the 5 A Day Initiative project (http://www.5amtag.de/) in German language), under the auspices of the German Cancer Society in Frankfurt, Germany entered into a collaborative research agreement with the EPIC study to ensure continuation.

 

OECD Study

OECD Study of Cross-National Differences in the Treatment, Costs and Outcomes of Ischaemic Heart Disease conducted in 2003 compared treatment trends and health outcomes on a disease-by-disease basis and represented a first step for improving our understanding of health care system performance through a disease-based analysis

Governance

  • Project sponsored and coordinated by the OECD Directorate for Employment, Labour and Social Affairs.
  • No contact person found
  • No project website available

 

 

 

 

Coverage

 

 

 

 

 

 

 

 

 

 

 

  • Participation of 17 countries (Austria, Canada, Switzerland, Denmark, Spain, United Kingdom, Greece, Hungary, Italy, Japan, Republic of Korea, Mexico, the Netherlands, Norway, Portugal, Sweden, United States).
  • Hospital discharge data collected on case-fatality, readmissions, etc.
  • Data collection based on a series of national reports on ischaemic heart disease epidemiology, treatments and costs prepared by a network of over 70 epidemiologists, physicians and health economists, supplemented with data from existing national and international sources in consultation with participating expert and from MONICA project (http://www.ktl.fi/monica/).

 

Output and Results

  • The study represents one of the first full-scale attempts at comparing the performance of health care systems using a comprehensive disease-based framework, utilizing large hospital administrative data bases based on individual medical records, supplemented with other sources of relevant information.
  • The final report of the study is a useful tool for comparing how ischemic heart disease is treated across countries.

Access to Data

Data quality

  • individual hospital discharge records were used to provide a direct link between treatments and outcomes
  • Standardized methods of data collection and analysis were used by Tech Research Network (described in the final report)

Linkage

  • No data linkage possible with external data (from outside perspective)

 

 

Strengths and Weaknesses

Strength:

  • The study relies on experience and data of the most extensive international project studying trends in cardiovascular disease: MONICA project
  • Collaborating with the Tech Research Network (an international collaboration of investigators that is developing new evidence on international differences in trends in treatment, resource costs, and health outcomes for similar health problems)

 

 

 RARECARE

RARECARE, Surveillance of rare cancers in Europe (2007-2010), was intended to help define indicators, collect and analyze data on rare cancers on a sustainable, long-term basis.

 

Governance

 

 

 

 

 

Coverage

  • Population- level data on cancers from 89 population-based cancer registries in 22 countries (Austria, Belgium, Croatia, the Czech Republic, Estonia, Finland, France, Germany, Iceland, Ireland, Italy, Malta, the Netherlands, Norway, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland and the UK).
  • The mean population covered was about 162,000,000 corresponding to 39% of the population of countries participating in RARECARE and 32% of the European Union (EU27) population.
  • Cancer incidence and survival rates for 1995–2002 and prevalence at January 01, 2003 were estimated.
  • Macro indicators related to health system were collected and the relation with rare cancer epidemiological data analysed.

 

 

Output and results

  • Incidence, survival, prevalence and mortality for all rare cancers has been estimated
  • It generated an operational definition of “rare cancers” (with incidence less than 6 per 100,000 persons / year) and a list of cancers meeting that definition with multidisciplinary and international agreement.
  • The study assessed quality and comparability of rare cancer data between cancer registries and developed strategies for the diffusion of information among all the key players involved in surveillance on and treatment of rare cancers (clinicians, patients, health planners, researchers).

Access to data

  • A list with published articles and a data quality report is available on the multilingual webpage (http://www.rarecare.eu)
  • Possibility to search for rare cancers (incidence, prevalence, mortality) and link to the relevant pages of the technical report annex.
  • Data cannot be accessed directly.

 

Data quality

  • Data quality of the RARECARE database was analyzed and a data quality study on a sample of rare tumors was conducted to assess validity, completeness and standardization of cancer registries data between registries and defining recommendations for improving data quality (data quality report: http://www.rarecare.eu/rarecancers/report_data_quality_final.pdf)
  • To improve data quality the collected information were reviewed, the results were disseminated and linked to other information resources via http://www.rarecancerseurope.org

Linkage

  • No data linkage possible with external data (from outside perspective)

Strengths and Weaknesses

Strengths:

 

EuroCHIP-3

EUROCHIP-3 (2008-2011) builds on the experience of the previous EUROCHIP projects and is a multidisciplinary 3-year common-action project involving all EU Member States to remedy major inequalities in cancer, and form the pillars of an EU cancer control strategy (i.e. cervical cancer screening in Eastern Europe, EU cancer registration, information on survivorship, information on cancer costs & outcomes). The cancer inequalities addressed were already identified by EUROCHIP2 (2003-2007; http://www.tumori.net/eurochip/actions.php) that acted as a network of networks, agencies, institutions, policy makers, medical associations and patients groups, to promote actions aimed at reducing inequality gaps in cancer information. EUROCHIP-1 (2001-2003; http://www.tumori.net/eurochip/indicators.php), had delivered a list of Cancer Health Indicators for the cancer domains of Prevention, Screening, and Care before.

 

Governance

  • Funded by DG SANCO and subsidized by the Public Health Executive Agency, European Commission 2008.
  • Coordination: Fondazione IRCCS "Istituto Nazionale dei Tumori" - Italy
  • Contact person: Dr. Andrea Micheli Fondazione (Project leader), IRCCS, Tel: +39 02 23902869, Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Website: http://www.tumori.net/eurochip/

 

 

Coverage

  • The project proposes a platform for an EU debate on how to reduce cancer costs while guaranteeing access to best practice to all. The Network is composed by the EUROCHIP Panel of Experts (i.e. one delegate from each one of the 27 EU MS), several EU health authorities, all the most relevant cancer networks, agencies and organizations, over 100 cancer researchers and stakeholders
  • Questionnaires were addressed to all European population-based cancer registries to get insight in the present situation of the cancer registries.
  • Cancer registries from 35 different countries responded to the questionnaire, with a population coverage of 28%

 

Output and results

  • New information about reasons and importance of interventions related to increasing screening attendance/coverage.
  • The Project provides for the first time an overview of the routinely available variables for three cancer diagnosis and treatment indicators, among EU Cancer Registries. CRs should be stimulated to collect and use data for the three indicators, because of the relevance for optimizing cancer care. ENCR rules should be strictly followed for better comparability of data.
  • A list of cancer rehabilitation indicators was suggested, underlying main problems to take in consideration for their collection.

Access to data

  • Reports and large number of publications available on the webpage.

Data quality

  • Descriptive statistics were used to summarize registry details, staff and funding, data sources, screening and the use of CR data. Analysis of three main indicators: “stage of diagnosis”, “cancer treatment delay” and “compliance with cancer guidelines”.

Linkage

  • No data linkage possible with external data (from outside perspective)

 

 

 Strengths and Weaknesses

Strengths:

Weaknesses:

  • Different languages and terminology – e.g. some countries do not have a word for ‘screening’
  • Differences in the issues that need to be highlighted – organization of health system, cultural attitudes, resource levels, policies

 

 

HAEMACARE

HAEMACARE, Cancer Registry Based project on Haematologic Malignancies, was a three-year project (2005-2008) focused on population-based epidemiology of the tumours of haematopoietic system (lymphomas, leukaemias, multiple myeloma, myelodisplastic and myeloproliferative syndromes). Project also relied on the collaboration of European Cancer Registries, pathologists, haematologists and clinicians. Its aim was to bridge the gap between clinical research and public health information systems by increasing the availability and standardization of data on HMs according to the most updated clinical classifications.

 

Governance

  • Funded by the European Union under the DG SANCO, Public Health Programme and is organized in five work packages.
  • Contact person: Milena Sant, Project leader, Fondazione IRCCS, Istituto Nazionale dei Tumori, Milan, Italy, This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Website: www.haemacare.eu

 

 

 Coverage

  • Population-based data was collected of 37 cancer registries from Belgium, Finland, France, Italy, Ireland, Malta the Netherlands, Spain, Switzerland.
  • A panel of experts, consisting of haematologists and epidemiologists from the countries participating in the project, collaborated to the project. Its role was to reach a consensus for classifying the existing morphology codes into disease groups that were as similar as possible to those used in clinical studies, and compatible with WHO classifications.

 

Output and results

  • A list of comparable subgroups of Non Hodgkin lymphoma (NHL), based on the classifications used by cancer registries, was agreed. This classification of subtypes of NHL was planned to be diffused to International Association of Cancer Registries to be used for incidence and survival analysis. The morphologic groupings were sent to all European Cancer Registries in order to promote their utilization for estimating incidence and survival of HM, and help interpreting differences in survival.
  • In consideration of the poor standardization of coding practices among cancer registries, a manual for coding hematological malignancies in Cancer Registries was written.

Access to data

  • Reports and meeting minutes available on webpage.
  • No direct access to data possible.

 

 

 Data quality

  • The international “Manual for Coding and Reporting Haematological Malignancies”is available on the HAEMACARE website. Translations in other languages (French, Italian, Spanish, Dutch, Finnish etc.) should follow. The manual integrates and summarizes the experience of the existing coding rules or manuals in use in different countries.

Linkage

  • No data linkage possible with external data (from outside perspective)

 

Strengths and Weaknesses

Strengths:

  • Creating an expert panel consisting of hematologists and epidemiologists from the countries participating in the project
  • HAEMACARE was closely related to EUROCARE (http://www.eurocare.it/) and will profit from the collaboration with EUROCHIP (http://www.tumori.net/eurochip/).

 

 

EuroCARE

EUROCARE, EUROpean Cancer Registry-based study on survival and care of cancer patients, was an epidemiology research project that had collected and analyzed survival data on patients diagnosed from 1978 to 1984 (EUROCARE-1), from 1978 to 1989 (EUROCARE-2), from 1983 to 1994 (EUROCARE-3) and from 1988 to 2002 (EUROCARE-4). The main aim of EUROCARE-4  was to update survival of cancer patients in Europe and to detect timely substantial changes across regions and over time. EUROCARE-5 (up to 2007) continued the activity of surveillance and the comparison between survival and care of cancer patients.

 

 

Governance

 

 

 

 

 

Coverage

  • Data from 93 population-based Cancer Registries in 23 European countries (Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Iceland, Ireland, Italy, Malta, Norway, Poland, Portugal, Slovenia, Spain, Sweden, Switzerland, The Netherlands, England, Northern Ireland, Scotland, Wales)
  • Analysis of survival of cancer patients by means of conventional and more innovative methods: e.g. cohort relative survival; period survival analysis to estimate survival of patients with recent diagnosis; mixture survival model to estimate the proportion of patients cured.
  • Survival data of adult patients, cross-classified according to cancer site, population, sex, age, and period of follow-up (from 1- to 5-year) - observed, expected and relative survival rates are given.
  • Comparison of cancer survival between Europe and USA will be made available. Until now survival of the EUROCARE patients has been compared with patients included in the SEER network (http://seer.cancer.gov/). This comparison will now be extended to the US registries of the NCR (National Cancer Registry)

 

 

 

 

Output and results

  • More than 100 published articles available on website (http://www.eurocare.it)
  • EUROCARE-4: Accordingly, survival of European cancer patients varies markedly by country, region, age and sex. Relative excess risk of death is 28% higher in Eastern Europe than central Europe; the relative excess risk of death is much higher for patients of age 55–99 years than those of age 15–54 years.
  • EUROCARE-5: Comparing diagnostic and therapeutic procedures for cancer patients in Italy with those in other European countries at high survival by means of high resolution studies (HR).
  • Important long-term outcomes (from the whole EUROCARE project): Reduce inequalities in cancer care and survival across Europe and provide information and increase standards.
  • Increasing and promote the use of cancer survival registry data. The EUROCARE results will be diffused among the medical, public health and scientific communities, to the public in general, to tumour patients and to health planners.

Access to data

  • Only access to EUROCARE-3 (1990-1994) and EUROCARE-4 (1995-1999) data sorted by cancer, population, age class, time from diagnosis, sex, output indicators possible.

Data quality

  • An algorithm assigned standardized sequence numbers to multiple cancers only first malignant cancers were used to estimate relative survival from registry, year, sex and age-specific life tables. Age-adjusted and Europe-wide survival were also estimated

Linkage

  • Linkage of cohort data from the outside possible to a limited extend (xls, txt) for EUROCARE -3 (1990-1994) and EUROCARE -4 (1995-1999)

Strengths and Weaknesses

Strengths:

 

 

EUROCISS

EUROCISS, the European Cardiovascular Indicators Surveillance Set, was set by a partnership of EU countries to develop health indicators and recommendations for monitoring the burden and distribution of cardiovascular disease (CVD). EUROCISS was implemented in two phases. One of the main objectives of the 2nd phase was the preparation of the Manual of Operations for the implementation of population-based registers of acute myocardial infarction/acute coronary syndrome, stroke and of CVD surveys.

 

   Governance

  • EUROCISS was coordinated by the Istituto Superiore di Sanità (ISS), Centre of Epidemiology, Surveillance and Health Promotion, Unit of Epidemiology of Cerebro and Cardiovascular Disease, Rome, Italy
  • It is part of the Health Monitoring Programme (HMP) financed by the European Commission (EC).
  • Contact person: Mrs Simona GIAMPAOLI (Project leader, head of Unit of Epidemiology of Cerebro and Cardiovascular Diseases, National Centre for Epidemiology, Surveillance and Health Promotion); Tel: +39 06 49904231; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Website: http://www.cuore.iss.it/eurociss/en/project/project.asp

 

   Coverage

  • 1st phase (EUROCISS 1) took place between 2000 and 2003 and involved 15 European Countries (Austria, Belgium, Finland, France, Germany, Italy, The Netherlands, Norway, Portugal, Spain, Sweden, United Kingdom, Denmark and Greece) and the European Heart Network.
  • 2nd phase (EUROCISS 2) was implemented between 2004 and 2007 and involved four additional countries (Czech Republic, Hungary, Iceland and Poland).
  • Population-based registers, hospital discharge records, surveys, longitudinal studies , GP-networks

 

    Output and Results

  • The most important achievement of the EUROCISS Project has been the development of the Manuals of Operations for the implementation of population-based registers of acute myocardial infarction/acute coronary syndrome (AMI/ACS), stroke and of CVD surveys.
  • Development of the project WEB SITE (http://www.cuore.iss.it/eurociss/en/progetto/progetto.asp) which provides a detailed and interactive description of the project and of recommended indicators, established within the page of the Progetto CUORE of the Italian Institute of Health (ISS) and Ministry of Health.
  • Creation of expert’s network from each country to support the monitoring of cardiovascular diseases across Europe.

 

  Access to Data

  • The final report can be found here: http://www.cuore.iss.it/eurociss/progetto/pdf2007/2007-REPORT.pdf
  • The website also provides most important data bases at European level: WHO (MDB and HFA-DB), OECD, EUROSTAT and the MONICA-WHO Project.
  • Data is also provided on countrly level, such as: hospital discharge records, surveys, registers, cohort longitudinal studies and General Practitioners’ networks - not all existing sources of information are available in European countries.

 

Data quality

  • Selected indicators are validated through standard methodology in all countries (WHO diagnostic criteria, or the MONICA diagnostic criteria or the New Criteria of the Joint ESC/ACC are chosen as golden standard for validation in all countries)
  • Due to differences among countries in data collection methods and analysis of diagnostic categories, data comparison remains difficult at the national level.

 

  Linkage

  • Linkage between mortality data and Hospital Discharge Records (HDR) through Personal Identification Number (PIN) is possible for Denmark, Finland, Iceland and Sweden.
  • Therefore it is recommended that all medical and death records across Europe adopt a personal identification number (PIN), which would allow an easier and more accurate record linkage among the different sources of information.

Strengths and Weaknesses

Strenghts:

  • Using data and experience of the previous MONICA project (http://www.ktl.fi/monica/)
  • Easy accessible and informative website

 

 


 

EPSILON

EPSILON, The European Psychiatric Services: Inputs Linked to Outcome Domains and Needs, was conducted from 1996-2000. Its aim was to produce standardized European versions of five instruments in key areas of mental health service research (needs for care, family or caregiving burden, satisfaction with services, quality of life, and socio-demographic and service receipt) in five languages/countries (UK, Spain, Italy, the Netherlands and Denmark) and to compare data from these countries regarding patients with schizophrenia and mental health care provision and costs.

 

Governance

  • EPSILON was an EU BIOMED-2-funded comparative, cross-national, cross-sectional study that was carried out by different research teams.
  • No contact person available.
  • No website available; some information can be found here: http://www.rcpsych.ac.uk/files/samplechapter/100_4.pdf

 

 

 

 

 Coverage

  • 404 patients with schizophrenia of local mental health services were interviewed to compare data about social and clinical variables, mental health care and costs.
  • Core study instruments translated and adapted for use in the five countries/languages included the following:
  • The Camberwell Assessment of Need (CAN-EU): assessing 22 individual domains of need (ranging from accommodation, food, and household skills to welfare benefits, basic education and telephone)
  • The Client Socio-Demographic and Service Receipt Inventory (CSSRI-EU), The Involvement Evaluation Questionnaire (IEQ-EU), The Lancashire Quality of Life Profile (LQoLP-EU) and The Verona Service Satisfaction Scale (VSSS-EU)

 

Output and results

  • The instruments developed were reliable across the range of countries.
  • Data obtained provided a multidimensional picture of the needs of people with schizophrenia, their service use and their subjective appraisal of quality of life and services available.

Access to data

Data quality

  • Information about the project is scarce.
  • Instruments were subjected to a conversion procedure including translation, back-translation, focus group discussion and reliability assessment.

Linkage

  • No data linkage possible with external data (from outside perspective)

 

 

 Strengths and Weaknesses

Strengths:

  • Making the five research instruments available to a wider audience of researchers and service managers involved in mental health services research and planning throughout Europe, a lasting contribution to the field of mental health services research was achieved.
  • The IEQ-EU has become the most widely used instrument to measure caregiver consequences and has been translated into not only the five language versions of the EPSILON study but also into Finnish, French, German, Portuguese, and Swedish.

Weaknesses:

  • Project does not have its own website ( Last check: 03.05.2013)

 

B.I.R.O.

B.I.R.O. (Best Information through Regional Outcomes) is a three year public health project started in 2005 with the mission to provide strategic information to support coordinated prevention, integrated care and outcomes management in diabetes across Europe as well as to provide European health systems with an ad hoc, evidence and population-based diabetes information system.

 

Governance

  • Project is sponsored by the European Union under the Health Information Strand of the Public Health Program (DG-SANCO)
  • Coordinated by the University of Perugia, Perugia, Italy.
  • Project website: www.biro-project.eu
  • Contact Person: Mr. Massimo Massi-Benedetti (Project Leader);
  • Phone: +39 075 5727627; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Coverage

  • B.I.R.O. represents an international collaboration between innovative partners that are involved in defining and applying common rules for the development of a Shared European Diabetes Information System (SEDIS).
  • Gathers seven public institutions from Italy, Austria, Scotland, Norway, Romania, Malta and Cyprus.

 

 

Output and Results

  • The BIRO consortium developed a shared European Diabetes Information System (SEDIS), that produces diabetes health reports generated automatically from a common dataset used by participating regions
  • A list of N=85 candidate indicators was suggested, with a total of N=49 items selected as relevant for BIRO.
  • Global statistical reports are made possible through a central engine that submits all results to an automated a web portal.

Access to Data

  • BIRO software is free, open source available to anyone interested and can be easily download it.

 

Data quality

  • The architecture of the BIRO project envisages the construction of two different subsystems, namely the “Local BIRO System” and the “Central BIRO System”. This means that many procedures Implemented on one end must be coupled with similar ones on the other end to allow for results to be compared across sites and from each site to the European average.
  • A European minimum common dataset and data dictionary has been developed to become applicable in every existing clinical dataset for diabetes.

Linkage

  • The software allows local data linkage to pool clinical data with different administrative data sources (hospitals, diabetic clinics, GPs, pharmaceutical expenditures, pathology tests, etc.).

Strengths and Weaknesses

BIRO software is free and available to anyone interested

  • Currently, BIRO is used by the EUBIROD project (www.eubirod.eu) who coordinates diabetes registers from 20 EU Countries and uses the BIRO System to carry out the analyses required for the production of the 1st European Diabetes Report.

  

EUBIROD

EUBIROD, the European Best Information through Regional Outcomes in Diabetes, was a three years public health project in the field of diabetes started on the 1st September 2008, with the mission to implement a sustainable European Diabetes Register through the coordination of existing national/regional frameworks and the systematic use of the BIRO technology.

 

Governance

  • Project is sponsored by the European Union under the Health Information Strand of the Public Health Program (DG-SANCO).
  • Coordinator of the project is the Department of Internal Medicine at the University of Perugia (Italy).
  • Contact Person: Massimo Massi-Benedetti (Project Leader/Manager); Phone: +39 075 5727627; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project Website: www.eubirod.eu

 

 

Coverage

  • The EUBIROD Project gathers 20 Partners and 2 Collaboration Institutions of at least 20 States, including EU Member States, Acceding/Candidate Countries, and EFTA Countries (Italy, Austria, Scotland, Norway, Romania, Malta, Cyprus, Sweden, Hungary, Belgium, Ireland, Netherlands, Slovenia, Luxemburg, Poland, Germany, Croatia, Spain and Kuwait).

 

 

Output and Results

  • The main product arising from the project will be the European Diabetes Report: an analysis of quality of care and outcomes in diabetes based on standardized criteria and a reference population of over 500,000 subjects.
  • Final report with project outcomes not yet available on the website (Last check: 03.05.2013)
  • Participants are connected through a system that automatically generates local statistical reports and safely collects aggregate data to produce international reports of diabetes indicators. The results can be used to develop recommendations for policy makers and to deliver prompt information to people with diabetes and all citizens.

Access to Data

  • The system is completely open source and will be made freely available to third parties interested in joining our efforts to improve the quality, comparability and coverage of diabetes information across the world.

Data quality

  • Possibility to execute customized ETL (extraction, transformation, loading) process for diverse individual data sets was integrated into the Customized Toolbox of BIROX software

Linkage

  • Although some partners do not have a global unique patient identifier that covers all data sources, a patient ID is assigned to identify data associated with a patient from each source (not from outside perspective).

 

Strengths and Weaknesses

Strenghts:

  • Each participating center can, through the use of the BIRO system, produce own report independently etc.
  • Establishment of the BIRO academy, a major dissemination activity of the EUBIROD project, that provides a series of Annual Residential Courses structured in lectures and practical sessions (as well as the e-learning platform), where participants get acquainted with the usage of diabetes data and application of the BIRO system.

EUROTHINE

EUROTHINE – Tackling Health Inequalities in Europe – aimed to improve the description of health inequalities in Europe and to enhance the evidence-base for policies to reduce inequalities in health. The 2 principal objectives were: (1) the preparation of international overviews providing bench-marking data on health inequalities to participating countries; and (2) the assessment of evidence on the effectiveness of policies and interventions to tackle health inequalities and to make recommendations for strategies for reducing health inequalities in participating countries.

 

Governance

  • The Eurothine project is funded by the public health program of the SANCO Directorate General of the European CommissionCoordination of the project is carried out by the University of Verona (2004-2007).
  • Contact person: Albert-Jan Roskam (This email address is being protected from spambots. You need JavaScript enabled to view it. )
  • Website: www.eurothine.org

 

 

Coverage

  • More than 50 researchers from 20 countries were involved ( Austria, Belgium, Bulgaria, Czech Republic, Estonia, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, The Netherlands, Poland, Norway, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Turkey, UK).
  • Work was organized by means of one generic work package and four specific work packages that focused on areas such as health-related behaviors, health care utilization, and labor market and welfare conditions using Patient level data, National survey/interview, International surveys, Mortality register with information on socioeconomic characteristics of diseases, Mortality follow-up data linked to national population censuses, case-studies with regards to smoking

 

 

Output and results

Among the results are:

  • Overviews of available data from national and international sources for the description of health inequalities; harmonized data sets on the basis of national health interview surveys and mortality registers, series of overviews on socioeconomic inequalities in health and health determinants, which compare countries with regard to the magnitude of health inequalities and thus provide benchmarking data for each EU member state.
  • Specific recommendations were formulated for labor market and welfare policies, health care organizations, interventions and policies to improve health-related behaviors and health equity targets.

Final conclusion:

  • not realistic to eliminate health inequalities in the near future, but reducing them to more acceptable levels is well within the realm of possibility

 

Access to data

  • Results are disseminated in various ways, including papers for international journals, training course, and publications on the website (www.eurothine.org)
  • Final report available on the website

Data quality

  • International comparability hampered through lack or low quality of even most basic data on socioeconomic inequalities
  • Technical documents available on the website.

Linkage

  • Information on data linkage is not specified in reports

Strengths and Weaknesses

Strengths:

  • First study to compare health inequalities and their causes between such a large number of countries.
  • Most overviews on socioeconomic inequalities concentrated on specific diseases, such as cancer, diabetes
  • Using SHARE database (http://www.share-project.org/).

  

COMPARE

COMPARE - Toolbox for Improving the Comparability of Cross-National Survey Data with Applications to SHARE (Survey of Health, Ageing and Retirement in Europe) was a two year public health project initiated in 2006 with the purpose to collect survey data aimed at creating internationally comparable measures of several dimensions of the quality of life - health, economic position, work disability, contacts with family and friends, health care quality, political efficacy, and satisfaction with life as a whole. COMPARE is part of the family of research projects linked to the SHARE project.

 

Governance

  • Funded by the European Commission through the STREP project COMPARE # 028857 in the Citizens and Governance in a Knowledge-Based Society Programme.
  • Coordinated by the Universiteit van Tilburg, The Netherlands.
  • Contact Person: Mr. Arthur Van Soest (project coordinator); Phone: + 31 13 466 2028; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: www.compare-project.org

 

 

Coverage

  • COMPARE provides a multidisciplinary and cross-national panel database of micro data on health, socio-economic status and social and family networks of more than 30,000 individuals of age 50 and older and their spouses in 11 countries (Sweden, Germany, Israel, Poland, Netherlands, Belgium, France, Czech Republic, Spain, Italy and Greece).
  • The data collection in COMPARE is linked to SHARE project (http://www.share-project.org/)

 

Output and results


  • Final report with outputs and results of the project is not available on the webpage (Last check: 03.05.2013)
  • Main planned outcome: Development of widely applicable tools for comparative survey research among European citizens, called anchoring vignettes, used to make subjective assessments comparable across countries and socio-economic groups.

Access to data

  • Data will be available for scientific research free of charge to all interested researchers, in the same way as the SHARE data.

Data quality

  • Information on data quality is not specified ( no outcome reports available on the website)

Linkage

  • Information on data linkage is not specified ( no outcome reports available on the website)

 

Strengths and Weaknesses

  • Development of anchors (anchoring vignettes) that can be used in a broad range of domains (such as health; work disability; quality of life, employment and health care; satisfaction with political institutions) and that can be applied to typical EU sponsored cross-national surveys (such as the ECHP, ESS, SHARE and SILC).
  • Maintenance of project website is lacking. Website last updated in 2008, no reports available, links to documentations are outdated ( Last check: 03.05.2013)

 

 

 

 EuroDRG

The EuroDRG project (Diagnosis-Related Groups in Europe: towards Efficiency and Quality) was a 3-year project initiated in 2009 with the aim to analyse the way DRG systems in EU countries are used to classify and reimburse patients in hospitals. Furthermore, it drawed conclusions about the determinants of costs of hospital services and the relationship between DRGs and quality of care across Europe. Finally, the project outlined the preconditions for a European-wide DRG-system.

 Governance
  • EuroDRG was funded under the 7th EU Research Framework Programme.
  • The project was coordinated by the Berlin University of Technology, Department of Health Care Management.
  • Contact person: Reinhard Busse Tel.: 0049 30 314 28420, Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Webpage: http://www.eurodrg.eu
  Coverage
  • The EuroDRG project analysed DRG systems in 12 European countries (Austria, Estonia, Finland, France, Germany, Ireland, the Netherlands, Poland, Portugal Spain, Sweden, UK)
  • Patient level data of 10 episodes of care (representing different medical specialties, diagnostic and therapeutic procedures) were collected to gain insights into how different DRG systems deal with comparable patients and to (re-) group patient data in a comparable manner across Europe
  • Project partners had to provide patient level cost data (some partners hospital level cost data) linked to demographic variables, main diagnoses and co-morbidities, procedures/ technologies, data on the quality of care (e.g. mortality, readmissions and other indicators for quality of care) that can be linked to hospital characteristics (e.g. beds) as well as regional and national characteristics (e.g. population density, wages) which may be suitable for cost weight calculations
  • Detailed cross-country comparisons of classification variables, hospital payments, and DRG system performance were conducted.
   Output and results
  • Comparative knowledge about the essential building blocks of DRG-based hospital payment systems across European countries - the results are summarized in the book “Diagnosis Related Groups in Europe: Moving towards transparency, efficiency and quality in hospitals”
  • Findings may be used as a guideline for other countries having little or no experience in DRG’s when developing and optimizing their national systems.
  • Comparisons of hospital costs and resources use (LOS) for common treatments. A Health Economics Special Issue was published in 2012 abuot Diagnosis-Related Groups in Europe (EuroDRG): Do they explain variation in hospital costs and length of stay across patients and hospitals? (Health Economics, Volume 21 (Supplement 2)
  • A series of articles with comparisons of DRG algorithms and hospital reimbursements across countries have been submitted to different medical journals.
Access to data
  • No direct access to data possible.
  • A high number of presentations and publications available on the website: http://www.eurodrg.eu

 

Data quality
  • Information on data quality is not specified on the website
Linkage
  • No data linkage possible with external data (from outside perspective)
  Strengths and Weaknesses

Strengths:

  • One of the few projects presenting detailed hospital cost data across countries
  • Provided systematic information on different DRG systems and common issues in their design
  • Many publications available free of charge

Weaknesses:

  • The number of hospitals covered in cost/LOS analysis varied across counties
  • Pooling data across countries proved to be difficult and analyses are carried separately in each country

 WMH

The WMH (World Mental Health) Survey Initiative is coordinating the implementation and analysis of general population epidemiologic surveys of mental, substance use, and behavioral disorders in countries in all WHO Regions. The WMH Survey Initiative aims to obtain accurate cross-national information about the prevalence and correlates of mental, substance, and behavioral disorders.

 

Governance

  • The WMH survey initiative is a project of the Assessment, Classification, and Epidemiology (ACE) Group at the World Health Organization.
  • Contact person: Emily Phares, Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Website: http://www.hcp.med.harvard.edu/wmh/index.php

 

 

 

Coverage

  • The WMH Survey Consortium includes nationally or regionally representative surveys in 28 countries (Brazil, Colombia, Costa Rica, Mexico, Peru, United States, Nigeria, South Africa, Lebanon, Iraq, Belgium, Bulgaria, France, Germany, Israel, Italy, the Netherlands, Northern Ireland, Portugal, Romania, Spain, Turkey, Ukraine, India, Australia, China, Japan, New Zealand).
  • The initiative carried out rigorously implemented general population surveys that estimate the prevalence of mental disorders, evaluate risk factors for purposes of targeting interventions
  • Most WMH surveys are based on stratified multistage clustered area probability household samples.
  • Studies of correlates include analyses of impairments, other adverse social consequences, and patterns of help-seeking.
  • interviews are carried out face-to-face by trained lay interviewers - surveys use the WMH-CIDI, a fully structured diagnostic interview, to assess disorders and treatment

 

 

Output and results

  • The cross-national comparisons of the WHO project confirm, at a global level, the high prevalence of mental disorders, early age at onset, high comorbidity, substantive persistence, unmet treatment needs, significant delays between the onset and treatment, low treatment rates, and substandard treatment quality.
  • This unprecedented project has provided mentorship and indirect infrastructure development, serving as a catalyst in the grooming of the next generation of research leaders, facilitating the inclusion of mental health in national health policies, and stimulating the process of the possible allocation of resources commensurate with the burden of disorders, thus strengthening health systems.
  • An overview of all publications (2002 – 2012) is available on the webpage.

 

Access to data

 

Data quality


  • The WMH dataset is unprecedented in psychiatric epidemiology for its size (over 214,000 respondents), the range of disorders assessed, and the range of information collected on risk factors.
  • Several of the WMH surveys disregarded disorders that were thought to have low relevance in their countries, leading to inconsistency in completeness of coverage.

Linkage

  • No data linkage possible with external data (from outside perspective)

Strengths and Weaknesses

Stengths:

  • Cross national comparison of data on intercontinental level.
  • Targeting several aspects of mental health problems.
  • In many of the countries the WMH surveys provide the first community epidemiological data ever available on mental disorders in the population.

 

HealthBASKET

HealthBASKET – Health Benefits and Service Costs in Europe, was a three year project initiated in 2004 with the mission to consider policy as well as methodological challenges in a clear and unambiguous manner, by focusing specifically on the basket of services and by reviewing and developing methodologies to assess costs and prices of individual services across EU Member States. A key aim of the study has been to identify which data are required in order to engage in meaningful international comparisons.

 

Governance

  • Funded by the European Commission within the Sixth Framework Research Programme and directed by the European Health Management Association (EHMA).
  • Scientific coordination of the project by the Department of Healthcare Management, Berlin University of Technology.
  • Contact Person: Prof. Reinhard Busse; Phone: +49 30 314 28420; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website does not exist. 

 

 

Coverage

  • 9 Member States representing the various types of healthcare systems (Denmark, France, Germany, Hungary, Italy, Poland, Spain, United Kingdom and The Netherlands).
  • The study was completed in three phases involving systematic overviews of the different health systems and their methodologies for calculating costs based on a comparative country analysis as well as empirical exercises of cost assessment of a selection of services from the in-patient and from the out-patient in participating countries.

 

Output and results

  • First in-depth analysis of the benefit baskets and the benefit catalogues in nine European countries, representing a heterogeneous mix of health care systems.
  • A systematic review of the scientific literature on methodologies for calculating costs was conducted with the aim of identifying “best practice”.
  • Development of a “European Classification of Health Services” is set as a long-term expected goal.

Access to data

Data quality

  • The problem, encountered by many, if not all countries, is the limited quality of data delivered by providers, which represented a problem a challenge for the study. How the study proceeded with the problem is ,however, not discussed.

Linkage

  • No data linkage possible with external data (from outside perspective)

 

 

Strengths and Weaknesses

Strengths:

  • The methodology developed – i.e. using “case vignettes” – proved to be feasible and well-accepted, leading to realistic and valid results.

Weaknesses:

  • Service, cost and quality data are currently not routinely available for international comparisons.
  • Lack of a common “language” (or taxonomy: “European Classification of Health Services”) to explore and describe differences – whether justified by preferences, values, tradition, differences in providers or otherwise.
  • The project website www.healthbasket.org, mentioned in the final report, does not work (last check: 05.03.2013).

 

 

EuroHOPE

EuroHOPE has been launched in to evaluate the performance of European health care systems in terms of outcomes, quality, use of resources and costs on the basis of five key public health problems or diseases (2010 – 2014): Acute myocardial infarction, Stroke, Hip fracture, Breast cancer and low-birth-weight infants.

 

 

Governance

  • The project is coordinated by Centre for Health and Social Economics (CHESS) at the National Institute for Health and Welfare – THL and financed by the European Commission (FP7).
  • Contact person: Prof. Unto Häkkinen, Tel +358 29 524 6000 (This email address is being protected from spambots. You need JavaScript enabled to view it. )
  • Project website:http://www.eurohope.info

 

 Coverage

  • At the initial stages, the EuroHOPE project is carried out by eight beneficiary institutions from seven European countries: Finland, Sweden, Norway, the Netherlands, the United Kingdom (Scotland), Hungary and Italy.

 

 

 

 

 

Output and results

  • The project uses register data plus certain patient level data, such as information on comorbidities; treatments before, during, and after the condition; living status; recurrences; case fatality; and costs which will be collected for each hospital-treated patient.
  • They additionally collect data on health related quality of life measures (enabling Quality Adjusted Life Years as an outcome measure) and furthermore conduct a pilot-patient survey on patient satisfaction (including expectations)
  • The project is still ongoing (last check: 03.05.2013)
  • Among intermediate results:
  • Comparisons of differences in Europe regarding AMI
  • Hip fracture in Europe and differences between regions
  • Comparison of stroke treatment in Europe
  • Very-low-birth-weights infants and whether the country matters
  • A framework for health system comparison of costs, efficiency and outcomes
  • Further long-term results:
  • Development of a recommendation of a list of indicators to be routinely collected and published by the EU (as a part European community Health Indicators)

Access to data

Data quality

  • Information on data quality is not specified on the website

Linkage

  • Project seeks to establish nationwide databases with multiple administrative registry linkages at the individual patient level

 

Strengths and Weaknesses

Strengths:

  • EuroHOPE is an extension of the Perfect study carried out by THL, which developed a method that can be used to measure the cost-effectiveness of care on the basis of information recorded in registers
  • It furthermore links quality of care to costs/prices and targets several health problems at different levels ( hospitals, regions, countries)
  • It also seeks to establish nationwide databases with multiple administrative registry linkages at the individual patient level and – in combination - also uses patient surveys.

 

I2SARE

The European project I2SARE (Health Inequalities Indicators in the Regions of Europe) was established to produce a health profile for each region of the European Union, to create a typology of those regions of Europe and a typology of sub regional territories in a selection of countries and regions.

 

 

Governance

  •  
  • Contact: I2SARE Secretariat Tel. + 33 05 56 56 99 60 Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Website: http://www.i2sare.eu

 

 

 

 

 

 

Coverage

  • The I2SARE indicator database comprises a set of 37 indicators for 27 countries(Austria, Latvia, Belgium, Croatia, Cyprus, Czech Republic, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Lithuania, Luxembourg, Malta, Poland, Portugal, Republic of Ireland, Slovenia, Spain, Sweden, UK, Bulgaria, Romania, Netherlands and Slovakia)
  • Data collection: country statistical data on mortality, morbidity, health care services, health professionals, demographic and socioeconomic indicators, risk factors. Data were obtained from two sources:Each participating country through a country contact and Eurostat.

 

 

 

 

Output and results

  • Collection of data in 27 of the 30 expected countries (265 regions) and at infra-regional level in 6 of the 8 expected countries/regions (794 infra-regional territories)
  • It uses 37 selected indicators covering different aspects of health (mortality, morbidity, socio-economic determinants, health risk factors, health care resources, etc). Health profiles enable both the assessment of population health within an area and comparison with others.

 

 

 

Access to data

  • The website provides detailed information on the project progress and certain project deliverables and reports, such as Regional Health Profiles, Guidelines for an effective use, regional and sub-regional typology, the 12SARE indicator data base (password-protected) and presentations of the final conference 09/10

 

 

 

 

 

Data quality

  • Initial data validation involved: i)assessing the differences between country data and EUROSTAT data where the year was the same ii) checking for completeness of data and ensuring Eurostat data was used where country data was missing or incomplete iii) checking that data received was in the appropriate format
  • Further validation included looking for outliers for each indicator and checking the data and indicator calcualtion to ensure they were correct.

 

Linkage

  • Information on data linkage from outside prospective is not specified on the website

 

 

 

Strengths and Weaknesses

Strenghts:

Weaknesses:

  • For some countries it was difficult to identify any contacts, some countries have been unwilling to participate, and some countries have not had the relevant data to share
  • Eurostat data was used where countries did not provide data. In some cases data from Eurostat was incomplete for the mortality data, with the younger age group data not being reported. This restricted the calculation of DSRs in these instances

 

  

ECHIM

ECHIM, European Community Health Indicators and Monitoring (2009-2012) was a three-year project to develop and implement health indicators and health monitoring in the EU and all EU Member States. It continued the work of the previous ECHI and ECHI-2 projects.

      Governance
  • Funded by the General Directorate Health and Consumer Protection / The second Programme of Community Action in the Field of Health
  • Coordinated by Professor Arpo Aromaa (1.1.2009–31.12.2011) and Professor Mika Gissler (1.1.2012–30.6.2012). National Institute for Health and Welfare, P.O. Box 30, FI-00271 Helsinki, Finland.
  • Website and contact persons for the ECHIM core group members and countries available here: http://www.echim.org/contacts.html
        Coverage
  • Countries involved: Austria, Belgium, Bulgaria, Cyprus, Czech Republic Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, United Kingdom, Croatia, Iceland, Serbia, Turkey, Albania, Kosovo, Moldova, Norway, Switzerland
  • The work was based on the needs revealed by the observations during the previous ECHI phases. Joint Action for ECHIM created a model for the implementation plans for ECHI Indicators (88 key health indicators). A network of national experts was created in the previous ECHI phases and was kept up to date during the Joint Action for ECHIM. The European Commission’s HEIDI Data Tool was the central data gathering and dissemination application.
   Output and results
  • The ECHI shortlist was introduced in 2005. Since then, the indicator metadata have been improved and documented, and the ECHI shortlist updated in 2008 and 2012
 Access to data
  • ECHI short and long list available on the website as well as a link to the HEIDI Data Tool and the final report.
 Data quality
  • Pilot data collection using HEIDI( Health in europe: Infoamtion and Data Interface) data tool.
  • Experienced problems with lacking data for many indicators and with the poor comparability between countries and regions
 Linkage
  • Information on data linkage from outside prospective was not specified
   Strengths and Weaknesses

Strengths:

  • Even though the project has ended, this website is kept up as an archive of important ECHIM products, most notably the ECHI shortlist of 88 indicators and their metadata, and the three-volume Final Report
  • The development and implementation effort of ECHIM was directly built on previous ECHI and ECHI-2 projects

 

 

ECHO

The European Collaboration for Health Optimization (ECHO) project is an international effort to bring together the hospital databases of several European countries and make the data available via an online summary tool. It is an ongoing, three-year project initiated in 2010.

 

 

 

 

Governance

 

 

 

 

Coverage

  • 7 countries: Austria; Denmark; Spain; Portugal; Sweden; Slovenia; United Kingdom;
  • Anonymous patient data will be processed (admissions, treatments and discharges of patients), so that no individual can be identified. Ultimately, also, only summary data will be presented.

 

 

 

 

 

 

 

 

 

 

 

 

 

Output and results

  • One of the first and key activities in the project was to build a high-standard data-warehouse (DWH) to store the available and high quality data for the project, which is planned to be finished in the nearest future
  • A range of methodological developments, both for hospital-specific analysis and geographical analysis to make sure that data from different Member States can be used for comparison and further analysis
  • Analysis of the ‘casemix’ of each hospital in order to see whether differences in hospitals are in fact differences between their patients
  • Analysis that will allow for describing and mapping of variability in utilization, equity and efficiency, at healthcare area and hospital level; exploring underlying influencing factors, at system and individual level; and exploring the influences of healthcare systems as a whole.
  • Developing a tool for the project’s target group to safely use the data stored in the DWH

 

Access to data

  • Access to public documents on the project webpage

 

Data quality

  • Information on data quality from outside prospective was not found

 

Linkage

  • Information on data linkage from outside prospective was not found

 

 

 

Strengths and Weaknesses

Strenghts:

  • ECHO is the first international performance comparison pooling micro-data into a massive dataset (200 million discharges).
  • Describes equitable access, quality and efficiency on four levels: hospital, healthcare area, regional and country level.
  • Based on the pervious successful Atlas VPM Project ( http://www.atlasvpm.org )

 

GRADIENT

GRADIENT, Applying Public Health Policies to Effectively Reduce Health Inequalities amongst Families and Children (2009-2012) addresses health inequalities among families and children with the aim to influence policy-makers in taking necessary steps to reduce the health gradient.

 

 

 

Governance

 

 

 

 

 

 

 

 

 

Coverage

  • Collaborative research project involving 12 partners: (Germany, Iceland, Sweden, the Netherlands, Czech Republic, Norway, Spain, UK, Slovenia)
  • By literature reviews and focus groups & expert interviews it was identified what measures could be taken to level-up the socio-economic gradients in health among children and young people in the EU; those were to develop a consensus based European Framework to monitor and evaluate public health policies, to assess if and why children and families from different socio-economic groups respond and act differently to public policy interventions, to make a review of protective factors for the health of children and young people and their families focusing on social capital, and to analyse different welfare regimes and general policies in different EU countries and compare the impact for families and children.

 

 

 

 

Output and results

  • Development of a Gradient Evaluation Framework (GEF) tool, which highlights key factors that policy makers and practitioners should consider to ensure policies that can affect the well-being of children and youth
  • Insight that community social capital matters to the health of children and young people - an previously understudied area
  • Support the premise that the nature of welfare states matters – using the example of Slovenia

Access to data

  • Several project reports are accessible on the website

 

Data quality

  • 34 evaluation frameworks were reviewed and analysed using a bespoke protocol or set of dedicated analytical criteria drawn primarily from three sources: the EUHPID (European Health Promotion Indicator Development) health development model,  the Ottawa Charter for Health Promotion,  and the wider literature on health inequalities.

 

Linkage

  • No data linkage possible with external data (from outside perspective)

 

 

 

Strengths and Weaknesses

Strengths:

  • Development of the Gradient Evaluation Framework (GEF) as a European action-oriented policy tool to guide and inform technical experts in public health working at the Member State level.
  • Linked directly to the policy cycle, GEF is designed to assist those involved in the development, implementation, and evaluation of policies
  • Research on local, regional, national, EU and international level.

 

 

EUPHORIC

EUPHORIC - EU Public Health Outcome Research and Indicators Collection, was a multidisciplinary project (2004-2008) oriented to policy authorities and policy makers and aimed at building a consortium of participating countries in order to cooperate on benchmarking the outcomes of selected health performances and exchange information on quality standards, best practice and effectiveness in public health by developing and maintaining EU networks.

 

 

 

 

 

Governance

 

 

 

 

 

 

Coverage

  • 11participatingcountries: Austria, Germany, Slovakia, Bulgaria, Greece, Spain, Finland, Israel, Sweden, France, Italy.

The project was divided into three phases:

  • Survey: to make an inventory of outcome research studies and outcome indicators in participating countries
  • Pilot: to test selected indicators in participating countries
  • Dissemination: to make results available to EU authorities, institutions, study participants and citizens on a multi-language website.

 

 

 

 

 

Output and results

  • EUPHORIC defined a list of 54 outcome indicators in nine areas of disease and integrated the work carried out in other projects, such as ECHIM (www.echim.org) . For each health outcome indicator, detailed information was collected and also uploaded in a searchable database available on the project website.
  • Development of a web-based tool that allows hospitals to confidentially self-benchmark their in-house mortality rate.
  • Definition of statistical procedures for a comparative evaluation of outcomes using risk adjustment methodologies.

 

Access to data

 

Data quality

  • Information on data collection process and data quality is discussed in the final report

 

Linkage

  • Linkage is not possible from the outside prospective

 

 

 

 

 

Strengths and Weaknesses

Strengths

  • Project created a basis for the next project – EURHOBOP (www.eurhobop.eu)
  • EUPHORIC enhanced the important aspect that it is possible for hospitals to confidentially self-benchmark their in-house mortality rate when managing acute myocardial infarction, thereby triggering a process of improvement of provided health care with a direct benefit for the patients.
  • Development of a very informative project website with the information accessible in 11 languages

 

 

DISMEVAL

DISMEVAL - Developing and validating disease management evaluation methods for European healthcare systems, was a three year public health project initiated in 2009 with the aim to: (1) overview the approaches to chronic care and DM evaluation methods across Europe; (2) test and validate possible evaluation approaches using currently existing programmes; (3) develop recommendations for methods and metrics for the evaluation of chronic disease management.

 

 

 

 

 

Governance

 

 

 

 

Coverage

  • This project brings together a multidisciplinary team of 10 partners in 7 EU countries: Austria, Denmark, UK, France, Germany, the Netherlands and Spain.
  • Estonia, Latvia, Lithuania, Switzerland and Italy have also contributed survey information on the policy context for, and approaches to, chronic disease management in their countries.

 

 

 

 

 

 

 

 

 

 

Output and results

  • An overview of approaches to chronic disease management or their equivalent in 13 European countries has been made based on the collection of data on approaches to chronic disease management in each country and on methods and metrics used to evaluate these approaches using questionnaires.
  • The testing and validation of methods and metrics for the evaluation of chronic disease management has been completed using comprised studies carried out in six countries and using data from existing interventions (e.g. disease management programmes for diabetes type 2 in Austria and Germany, diabetes care groups in the Netherlands, provider networks for diabetes and for cancer in France, etc.).
  • Project contributed to policy development to improve chronic care by producing targeted reviews of the literature and conducting policy analyses including identifying the opportunities and limitations of policy transfer to and among EU countries.
  • Final report presents the overall findings of the work carried out within the DISMEVAL project.

 

Access to data

 

 

 

Data quality

  • Heterogeneity of IT infrastructure (providers used different documentation systems within and between sectors. Information systems operated by providers are not necessarily compatible and may necessitate adjustment to meet requirements imposed by evaluators.

 

Linkage

  • Information on data linkage from outside prospective was not found

 

 

 

 

 

 

 

 

Strengths and Weaknesses

Strengths:

  • DISMEVAL project has shown how the use of randomization or other methods of control is necessary to accurately assess the impact of such interventions. It also identified a range of methods that can be employed successfully to implement such controls.

Weaknesses:

  • Survey reports identified a ‘lack of a general evaluation culture’ as one main barrier towards producing sound evidence on disease management approaches.
  • Lack of financial and human resources acting as a barrier to systematic evaluation.
  • Disjoint between intent, at national level, to enhance coordination and integration, and ability at regional or local level to translate these ambitions into practice.

 

 

DUQUE

DUQuE Deepening our understanding of quality improvement in Europe ” is an ongoing cross-sectional study initiated in 2009, with the main goal to study the effectiveness of quality improvement systems in European hospitals.

     Governance
         Coverage
  • Participation of eight European countries (Czech Republic, France, Germany, Poland, Portugal, Spain, Turkey and the United Kingdom).
  • Following measures will be assessed using questionnaires at hospital/department level in a total of 240 hospitals from participating countries: external pressure, hospital governance, quality improvement system, patient empowerment in quality improvement, organizational culture and professional involvement.
  • Data at the patient-level (clinical effectiveness [through audit of medical records and direct observation], patient safety and patient involvement [through questionnaires]), for four conditions (stroke, acute myocardial infarction, hip fracture and delivery) will be collected in 96 of total hospitals.
  • In addition, from each hospital additional generic measures of patient safety and clinical effectiveness will be collected using administrative-level data.
        Output and results
  • Ongoing project ( Last Check: 03.05.2013)

Expected Outcomes include:

  • Hospital guidance - an in-depth overview on the effectiveness of quality and safety strategies and on how to integrate them in hospitals.
  • Appraisal scheme for purchasers - identifying the core quality and safety strategies that should be in place in European hospitals.
  • Development of catalogue of instruments and tools that can be used to build departmental or hospital quality and safety programme and an appraisal scheme to assess the maturity of the quality improvement system for use by hospitals and by purchasers to contract hospitals.
Access to data
  • Data accessible to participating hospitals through hospital logon on the DuQue Benchmarking Platform (benchmarking.duque.eu)
 Data quality
  • Not yet specified, ongoing project (Last checked: 03.05.2013)
 Linkage
  • Internal linkage only
      Strengths and Weaknesses

Strengths

  • Targeting quality improvement for several health conditions (stroke, acute myocardial infarction, hip fracture and delivery).
  • Project is built on a previous similar MARQuIS (Methods of Assessing Response to Quality Improvement Strategies) project (www.marquis.be , website not available [Last check: 03.05.2013])
  • Collecting data from different levels: hospital, administrative and patient level.
  • Project website informative and is regularly updated.

Weaknesses

  • Confidentiality issues in accessing clinical records: internal/external audit.
  • Obtaining ethics approval in multicenter studies

 

 

SHARE

SHARE, The Survey of Health, Ageing and Retirement in Europe, is a multidisciplinary and cross-national panel database of micro data on health, socio-economic status and social and family networks of more than 85,000 individuals (ca. 150,000 interviews) from 19 European countries (+Israel) aged 50 or over. The project was initiated in 2004 with the aim to understand the ageing process in Europe on the individual and the societal level and interactions between health, labor force participation, and institutional conditions.

 

      Governance

  • SHARE data collection has been funded by the European Commission through the 5th, 6th and 7th framework programmes, co-founded by the US National Institute on Aging.
  • SHARE is centrally coordinated at the Munich Center for the Economics of Aging (MEA), Max Planck Institute for Social Law and Social Policy.
  • Contact Person: Dr. Axel Börsch-Supan (Project coordinator), Phone: +49 (0)89-38602-357; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Website Project: www.share-project.org

           Coverage

  • Data on health variables (e.g. self-reported health, health conditions, physical and cognitive functioning, health behavior, use of health care facilities), psychological variables (e.g. psychological health, well-being, life satisfaction), economic variables (current work activity, job characteristics, opportunities to work past retirement age, sources and composition of current income, wealth and consumption, housing, education) and social support variables (e.g. assistance within families, transfers of income and assets, social networks, volunteer activities) were collected through questionnaires and biomarkers (SHARE wave 4).
  • WAVE 1: Eleven countries contributed data to the 2004 SHARE baseline study, ranging from Scandinavia (Denmark and Sweden) through Central Europe (Austria, France, Germany, Switzerland, Belgium, and the Netherlands) to the Mediterranean (Spain, Italy and Greece). Further data were collected in 2005-06 in Israel.
  • WAVE 2: Czech Republic, Poland and Ireland joined SHARE in 2006 and participated in the data collection in 2006-07.
  • WAVE 3 (SHARELIFE): Estonia, Hungary, Portugal and Slovenia joined SHARE in 2010.
  • WAVE 4: ongoing data collection; more countries intend to join.

    Output and results

  • SHARE is a multidisciplinary and cross-national panel database of micro data on health, socio-economic status and social and family networks of more than 45,000 individuals aged 50 or over.
  • Cross country data comparison, network expansion.
  • The project aims to help researchers understand the impact of population ageing on European societies and thus to help policy makers make decisions on health, social and economic policy

 Access to data

  • The data are available to the entire research community for scientific purposes free of charge: www.share-project.org

 Data quality

  • In order to achieve hight data quality, professional survey agencies have been selected in all participating countries. which were subject to a common set of requirements designed by the share coordinating team in order to minimize the occurance of non-sampling errors.

  Linkage

  • Direct linkage of survey data of the German SHARE respondents with their administrative records held by the German Pension Fund (DRV) using their Social Security Number.

      Strengths and Weaknesses

Strengths:

  • The project’s multi-disciplinary approach delivers the full picture of the ageing process.
  • The project has inspired other countries to conduct similar studies: Israel has adopted the SHARE questionnaire for a SHARE-Israel survey in the summer of 2005; Korea, one of the countries with the fastest population ageing processes, is starting to design a longitudinal survey on ageing which will follow SHARE.
  • SHARE has become a major pillar of the European Research Area, selected as one of the projects to be implemented in the European Strategy Forum on Research Infrastructures (ESFRI) in 2008 and given a new legal status as the first ever European Research Infrastructure Consortium (SHARE-ERIC) in March 2011.
  • Project website is very informative and user-friendly.

 

EUPrimeCare   

The aim of EUPrimeCare (2010-2012) isto develop a framework to analyze Primary Care across Europe, to assess and compare Primary Care models in terms of quality and identifying costs and to provide recommendations for Primary Care services regarding quality and cost.

 

 

 

 

 

Governance

  • The project is funded by the European commission under the 7th framework programme.
  • Coordinated by the Agencia de Evaluación de Tecnologías Sanitarias, Instituto de Salud Carlos III in Madrid
  • Contact though the e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Webpage: http://www.euprimecare.eu/

 

 

 

 

 

Coverage

  • Data from 7 European countries: Estonia, Finnland, Germany, Hungary, Lithuania, Spain, Italy.
  • A sample of 3020 europeans between 25 and 75 years old has been interviewed to investigate access, appropriateness and equity regarding primary care services in 7 EU countries.
  • In order to measure quality of care in the medical encounter, a series of clinical indicators were agreed by parners to be obtained from medical records. Indicators were proposed for 2 medical conditions: hypertension and diabetes mellitus type 2.
  •  Vignettes and focus group discussions were added to the collected information and give an overview picture.
  • Cost to be determined on macro as well as on micro level for different primary supply systems.

 

 

 

 

Output and results

  • The first deliverable of the Project provided a valid framework to individuate different models of primary care, to be extended to the other EU countries.
  • Although the methodology used for the identification of primary care models gave some standardization, the main results of this part of the study reveal a high level of heterogeneity between primary care systems, in terms of structure, financing, organization, scope of services, professionals involved.

 

Access to data

  • Fact sheets, some presentations and a report on methods for primary care cost measurement in EU are available on the internet: http://www.euprimecare.eu/

Data quality

  • No information on the data quality on the website ( Last check: 03.05.2013)

Linkage

  • Linkage is most likely not  possible

Strengths and Weaknesses

  • Weaknesses:
  • Project website does not contain much information on the outcomes, data quality and strengths/weaknesses of the project ( Last Check: 03.05.2013)

 

InterQuality

InterQuality (2010-2013) - International Research Project on Financing Quality in Healthcare, is a public health project established to investigate the effect of different financing methods and incentives on quality, effectiveness and equity of access to health care in four patient groups affected by: pharmaceutical care, hospital care, outpatient care and integrated care. The project also aims to develop collaborative practice models of healthcare, in the context of financing treatment of chronic diseases and to establish the feasibility and effectiveness of developed models in the settings of each partner healthcare system.

 

     Governance
     Coverage
  • Participating countries are Poland, Germany, Italy, Denmark, USA and UK.

Areas of research will include:

 

  •  Incentives
  • Clinical issues: quality outcomes, clinical efficacy and safety
  • Economic issues: cost control, cost-effectiveness, utilization of resources
  • Equity

 

      Output and results
  • Project ongoing (last check: 03.05.2013)
  • This research project will address the utilization of resources and efficiency, quality of care, including: equity of access, patient satisfaction and safety of treatment for four different sectors: hospital, outpatient, pharmaceutical and integrated care. Resources allocated by each sector will be analyzed in relation to risk of their overuse, underuse or misuse.
  • Project will provide support for Member States to choose the right financing mechanisms in the different areas of the healthcare system, according to their needs, in order to achieve better health with available resources.
Access to data
Data quality
  • Information on data quaity is not yet specified, ongoing project (last check: 03.05.2013)
Linkage
  • Information on data linkage is not yet specified, ongoing project (last check: 03.05.2013)
Strengths and Weaknesses
  • Not yet specified, ongoing project (last check: 03.05.2013)

 

 QUALICOPC

The aim of Qualicopc, Quality and Costs of Primary Care in Europe (2010-2013) is to evaluate primary care systems in Europe against criteria of quality, equity and costs. It will enable to answer questions like, which elements of structure and organization of primary care are associated with access to high quality services against affordable costs and also by what mechanisms primary care structure and organisation are related to overall health care system goals.

 

    Governance
  • Qualicopcis an EC funded project under the Seventh Framework Programme.
  • Coordination of the project is taken care by NIVEL (Netherlands institute for health services research).
  • Contact persons: Wienke Boerma (This email address is being protected from spambots. You need JavaScript enabled to view it. ), Willemijn Schäfer (This email address is being protected from spambots. You need JavaScript enabled to view it. )
  • Website: http://www.qualicopc.eu/
     Coverage
  • The QUALICOPC project includes 31 European countries (27 European Union (EU) member states, and Switzerland, Norway, Iceland and Turkey). Besides, Israel, New Zealand and Australia also participate in this study.
  • Data collection will take place in all countries through surveys amongst samples of primary care physicians and their patients.
  • A questionnaire for GPs aims to measure their professional activities and tasks, the process quality and aspects of accessibility. A second questionnaire aims to measure the patients' perception of primary care services, including quality of care, access to care and actual cost barriers.
  • The project will result in a database on about 7,000 GPs and 70,000 patients.
  • Additionally to the surveys, information from existing European databases and other sources will be used:
     
    • 1993 GP Task Profile Study (for comparison)
    • PHAMEU Database (for data on structure of PC)
    • OECD HCQI (for data on avoidable hospitalisation)
    • OECD Health Equity Project (for data on equity)
    • System of Health Accounts (for data on costs)
     Output and results
  • Project is still ongoing (last check: 03.05.2013)
  • The study will provide an answer to the question what strong primary care systems entail and which effects do those systems have on performance of overall health care systems.
  • To make insights tangible, good practices will be identified and disseminated.
  • The study results will be disseminated to the research community, policy makers and other stakeholders in the European health sector.
      Access to data
  • A book will be published containing results of the analyses by the themes, overviews per country and comparisons between countries as well as models of good practice.
  • A policy brief with key messages from the book will be presented to inform policy makers. The policy brief will contain lessons and recommendations directed at decision makers in Europe.
  • Links to latest country publications on primary care found in PUBMED, WHO and NIVEL library available on website: http://www.qualicopc.eu/.
 Data quality
  • Information on data quaity is not yet specified, ongoing project (last check: 03.05.2013)
 Linkage
  • Information on data linkage is not yet specified, ongoing project (last check: 03.05.2013)
 Strengths and Weaknesses
  • Strengths:
  • Uses existing Data from PHAMEU project (http://www.phameu.eu/) that aims to establish a sustainable health information and knowledge system on the state and development of primary care systems in Europe.

 

 

JA EHLEIS

 

JA EHLEIS (2011-2014) will contribute to the first partnership of Innovation Union, which focuses on active and healthy ageing and with the target of increasing by 2 years the average number of healthy life years by 2020. It aims to provide a central facility for the coordinated analysis and synthesis of life and health expectancies to add the quality dimension to the quantity of life lived by the European populations

 

 

 

Governance

  • The project is funded by the European commission under the 7th framework programme.
  • coordinated by the INSERM, the French National Institute of Health and Medical Research (http://www.inserm.fr)
  • contact person: Cédric Hassen-Khodja, Tel: +33 (0) 467 61 30 31 , Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: http://www.eurohex.eu/

 

 

Coverage

  • The JA:EHLEIS team consists of 27 members based in 20 institutions in 10 European countries
  • Health expectancies based on the two additional dimensions of health (chronic morbidity and self-perceived health)

 

 

 

 

Output and results

  • Project is still ongoing ( Last check: 03.05.2013)
  • Country reports including: a description of the main purpose of health expectancies, The HLY for the country of interest and for the overall 25 European Union member states (EU25), using the SILC question on long term activity limitation, The health expectancies based on the two additional dimensions of health (chronic morbidity and self-perceived health) for the country of interest, based on SILC, a global analysis of health expectancies of European countries, based on the SILC

 

Access to data

  • Website provides access to country reports, training material that helps interpreting the results, (technical) reports, presentations and (links to) scientific papers
  • Public access to Eurohex data base providing data on population, death and birth, health data, health& life tables (http://www.eurohex.eu/IS/)

 

Data quality

  • Information on data quaity is not yet specified, ongoing project (last check: 03.05.2013)

 

Linkage

  • Information on data linkage is not yet specified, ongoing project (last check: 03.05.2013)

 

Strengths and Weaknesses

Strenghts:

 

 

MANAGED OUTCOMES

 

MANAGED OUTCOMES (2010-2012) - Operations management and demand-based approaches to healthcare outcomes and cost-benefits research, is a public health project that aims to generate the necessary scientific basis to underpin informed policy decisions that improve healthcare outcomes and cost-benefits. The main goal of this project is to develop and disseminate theoretically rich but practical conceptual models and a toolkit of the healthcare service production system.

 

 

 

 

Governance

  • Funded by the Seventh Framework Programme of the European commission.
  • Coordinated by the AALTO UNIVERSITY, Finland.
  • Contact Person: Mr. Tomi Malmström (Project leader); Phone: +358 50 511 2517; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project Webpage: http://www.managedoutcomes.eu

 

 

 

 

Coverage

  • Participating countries: Finland, Germany, Spain, Netherlands, Belgium, France, Greece, UK
  • A wide range of data will be collected for representative 4 case studies on diabetes, dementia, stroke and osteo arthritis from participating countries.
  • The analysis of quality of care, costs, efficiency and access – among other factors – will thus take place inside these cases.

 

 

 

 

 

 

Output and results

  • Project finalised in December 2012, Final report not available
  • Project will develop different scenarios of healthcare systems based on the case studies developed, building also financial and operational models for the healthcare service production systems.
  • Recommendations will be given to provide regional, national and European-level decision-makers with a better understanding of healthcare systems. The objective is to inform stakeholders about relations and constraints in health systems.
  • The understanding developed in the project will be codified into a toolkit that can assist both policy makers and healthcare providers develop their own programmes. The toolkit will include both healthcare models, as well as future scenarios for structuring healthcare to optimize cost-benefits and healthcare outcomes.

Access to data

  • Information on data access is not available on the website, no final report (last check: 03.05.2013)

Data quality

  • Information on data quality is not available on the website, no final report (last check: 03.05.2013)

Linkage

  • Information on data linkage is not available on the website, no final report (last check: 03.05.2013)

Strengths and Weaknesses

  • Maintenance of the project website lacking, no updates on the outcomes of the project since it was been finalized ( Last check: 03.05.2013)

 

EPIC-Elderly

EPIC-Elderly - the role of diet on the longevity of elderly Europeans - is a study (2002-2005) in the context of the European Prospective Investigation into Cancer and Nutrition (EPIC) with the overall aim to assess healthy ageing of elderly Europeans and identify associated environmental predictors by using collected baseline and follow up data on environmental parameters, self-reported morbidity and cause specific mortality.

Governance

  • Funded by the European Union under the Fifth Framework Programme
  • Coordination center is based in National and Kapodistrian University of Athens, Greece
  • Contact Person: Professor Antonia Trichopoulou (Project Coordinator); Tel: +30 210 746 2073; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.    
  • Project website: http://www.nut.uoa.gr/EpicElderlyNAH/

Coverage

  • Databank contains data regarding sociodemographic, dietary and lifestyle parameters and self-reported morbidity recorded at enrolment, as well as, incidence of various morbid conditions and causes of specific mortality as recorded during follow-up, for the 100 000 EPIC-Participants over 60 years old, recruited from 8 European countries, namely France, Italy (Milan and Ragusa), Spain, Greece, Germany, Netherlands, Denmark and Sweden.

 

Output and resuts

  • Using available data the project has investigated:

    • 1.Associations of socio-demographic, dietary and lifestyle determinants, with some of the above indicated morbid conditions (e.g. fractures)
    • 2.Associations of socio-demographic, dietary and lifestyle determinants, with overall and cause-specific mortality among subjects who suffer from a specific morbidity(e.g. diabetes)
    • 3.Associations of specific morbidities (e.g., obesity by means of weight changes over the follow-up period) with overall and cause-specific mortality
  • Within the context of the project an information database containing the results from systematic reviews of the relevant literature was also created, to guide subsequent analyses.
  • Dissemination of the results was undertaken in the form of public health reports that were submitted to the European Commission focusing on the determinants of healthy ageing, scientific papers, a leaflet, a workshop and a website.

Access to data

  • Final report not accessible for public view ( access through authentification only)
  • Database restricted to programme participants ( access through authentification only)

Data quality

  • Data were centralised and integrated in a standartised format in the EPIC- Elderly database

Linkage

  • Linkage most likely not possible from outside perspective

Strengths and Weaknesses

Strengths:

  • Built on the previous successful EPIC project

Weaknesses:

  • Reports presenting results on the assessment of the health status of the EPIC-Elderly are not available for public view

 

 

 

 

 EROS

EROS (The use of stroke registers to assess the quality of stroke management across Europe) was a 4-year prospective study across Europe, initiated in 2002 with the aim to develop methods and collect data in European populations to estimate the impact of stroke and assess the quality of stroke care. The main objective of the study was to understand the factors underlying variations in the quality of care and outcome after stroke. New expertise and skills have been brought into this project to answer questions left unresolved by earlier international stroke research.

Governance

  • Funded by the European Union under the Fifth Framework Programme
  • Coordination center is based in Department of Public Health Sciences of King's College London (KCL). Data management centre located in The Department of Epidemiology and Health Promotion of the Finnish National Public Health Institute (KTL).
  • Contact Person: Vladislav Moltchanov; E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: http://www.thl.fi/eros/ (website does not work; last check: 03.05.2013)

Coverage

  • Participating countries are UK, Finland, Russia, Lithuania, Poland, France, Spain, Italy, Sweden.
  • Detailed clinical and healthcare information collected from unbiased population registers using standardized, novel, data collection methods.
  • EROS Quality Assessment Tool (EQAT) contained 251 items grouped into 11 domains, as follows: specialist stroke services (45 items), management protocols (51 items), the multidisciplinary team (8 items), caregivers and family (25 items), acute specific medical diagnosis (11 items), acute medical and surgical interventions (9 items), early disability assessment and management (20 items), rehabilitation interventions (43 items), transfer back to the community (9 items), long-term management (14 items), and supplementary questions (various nonclinical topics; 16 items).

Output and results

  • The European Registers of Stroke Quality Assessment Tool has potential to be used as a framework to compare services and promote increased implementation of evidence-based care.
  • Final report not available , short description of methodology is available here: http://stroke.ahajournals.org/content/42/5/1207.full

Access to data

  • Data most likely restricted to programme participants

Data quality

  • The items in the EQAT were derived from evidence-based guidelines and rated only according to the quality of their supporting evidence ( further information on data quality is not found)

Linkage

  • Information on data linkage from outside perspective is found ( last check: 03.05.2013)

Strengths and Weaknesses

Weaknesses:

  • Website does not lead to EROS Project  (last check: 03.05.2013)
  • Information on EROS project in internet is scarce

 

 ESAW

 

A European Study of Adult Well-Being (ESAW) was a 2-year project initiated in 2002 as part of the Global Ageing Initiative with the aim to produce a European Socio-Cultural Model for Ageing Well, which estimates the direct causal contribution of five key components (physical health and functional status, mental efficacy, life activity, material security and social support) with personal characteristics and culture to the outcome variable ageing well.

 

Governance

  • Funded by the European Union under the Fifth Framework Programme
  • Coordination center is based in University of Wales, Bangor, United Kingdom.
  • Contact Person: Professor G. Clare Wenger (Project Coordinator); Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: http://esaw.bangor.ac.uk//

Coverage

  • The ESAW partner countries are: Austria, Italy, Luxembourg, the Netherlands, Sweden and the United Kingdom.
  • A target sample of 2000 respondents was set in each country. Although all countries experienced higher than expected refusal rates, achieved samples reached values very close to the target, ranging from 1854 to 2417. The total European sample was comprised of 12,478 respondents.
  • A  representative population of adults aged 50-90 was selected by each of the country teams and interviewed face-to-face by means of structured questionnaires. Samples included both rural and urban areas.

Output and results

  • Cross-country comparison on the effect of the following variables: country, age, gender, rural or urban residence (location), ethnicity, household composition, work status, education and income on the availability and types of social support for older people.
  • Development of three Support Network Resource Scales (availability of family, contact with non-kin and community participation) and the associations between these ratings and the intervening variables (age, gender, location, ethnicity, household composition, work status, education and income).
  • Final report available under: http://esaw.bangor.ac.uk//social%20resources%20final%20report.pdf

Access to data

  • Data most likely restricted to programme participants

Data quality

  • Methods for handling of data cleaning and reliability testing were agreed between the teams. Cleaned datasets were subsequently combined into an integrated dataset by the UK Principal Investigator and all teams provided with a complete dataset.
  • Face-to-face questionnaires minimized data bias.

Linkage

  • Information on data linkage was not specified in the final report

Strengths and Weaknesses

  • Strengths and Weaknesses of the ESAW project were not discussed in the final report or on the website

 

GA2LEN

GA²LEN, the Global Allergy and Asthma European Network, is a consortium of leading European research centers specialized in allergic diseases, which include asthma. The 6-year Project was initiated in 2004 with the aim to combat fragmentation in the European research area, ensuring excellence in EU allergy and asthma research by bringing together institutions and researchers from across the EU. GA²LEN addresses the growing public health concern of allergic diseases, with its objectives to enhance the quality and relevance of research and to address all aspects of the disease, create a permanent and durable structure that will maximize the scientific contribution of Europe to this area, accelerate the application of research results to clinical practice, patients' needs and policy development, to promote training and integration between the public and private sector and to eventually decrease the social and economic burden of allergy and asthma throughout Europe.

 

Governance

  • Funded by the European Union under the Fifth Framework Programme
  • Coordination center is based in Charité Universitätsmedizin Berlin, Germany
  • Contact Details: Tel: +49 (0)30 450 518038; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Network website: http://www.ga2len.net

Coverage

  • GA²LEN is now the most widespread international network in allergy and asthma research with over 60 collaboration centers with researchers and experts from over 20 European countries.
  • GA2LEN Survey on the prevalence of airway disease and allergies in Europe consists of a total study population of 155.000 persons (15-75 years of age) in Europe .
  • The questionnaire includes questions on airway symptoms, asthma, COPD, rhinitis, sinusitis, eczema, smoking, profession, BMI, indoor environment and co-morbidity.
  • Shrot description of GA²LEN Survey and Follow-up is available under: http://researchnetworks.ki.se/converis/project/1151

Output and results

  • Over 500 papers were produced by GA²LEN members, some available on the website.
  • Final report not available in internet ( last check: 03.05.2013)

Access to data

  • Data  restricted to programme participants via authorised access on private GA²LEN website

Data quality

  • Epidata Software package was used to ensure that all centers collect and enter data in the same way. Software carries out data validation as well.  GA²LEN website was used to secure transfer of data and other study documents. 

Linkage

  • Data linkage is likely not possible from outside perspective

Strengths and Weaknesses

 

ONCOPOOL

The ONCOPOOL (Pooling of European Data to Harmonize Translational Research in Breast Cancer) was a European project which represented a retrospectively compiled database of primary operable invasive breast cancers treated in the 1990s in 10 European breast cancer units. Project was initiated in 2002 with duration of 33 months, with the aim to obtain a large dataset of breast cancers, from breast units representative of the presentation of the disease in Europe.

Governance

Coverage

  • 16,944 cases of breast cancer from 10 European countries (France, UK, Netherlands, Italy, Austria, Denmark, Finland, Ireland, Poland, Sweden) with tumors less than 5 cm diameter in women aged 70 or less (mean age 55) diagnosed between 1990–1999.
  • Data on date of birth, mode of diagnosis, pathology (size, lymph node status, grade, type, lympho-vascular invasion and hormone receptor) and therapies and outcome measures: first local, regional or distant recurrences, contralateral primary, date and cause of death.

Output and results

  • ONCOPOOL analysis provides information from a large dataset on Invasive Breast Cancers diagnosed in 10 European Specialist Breast Units in the 1990s 
  • ONCOPOOL has examined invasive operable breast cancers, presenting in women of 70 years or less; the important pathological and prognostic factors, their characteristic state at presentation, their relationships to survival; survivals (OS and BCS) at 5, 10 and 15 years after primary treatment; the effects of interventions on survival and the relationship of individual NPI to survival across all Units. The combined results give the most detailed picture so far advanced of the pathology and survival of these cancers across Western Europe.

Access to data

Data quality

  • All data were transferred to the Central Database at Nottingham City Hospital anonymised prior to transfer (with identifications preserved at the contributing Units).
  • On receipt the Central Data Manager inspected the data for cases not obeying the entry criteria, which were then withdrawn. At analysis cases without any follow-up information since operation were also withdrawn. 

Linkage

  • No information on the possibility of data linkage from outside perspective

Strengths and Weaknesses

Strengths:

  • Five- and 10-year survivals are given and the effects of interventions examined within this project
  • A follow-up data collection conducted at 20-year and even longer term survivals is planned in the future
  • ONCOPOOL resembles SEER(USA cancer survival database) in the accrual of tumour pathology, inter-relation of pathological factors, recording of treatments and relation of all these factors to outcomes but differs from SEER in following ways: data on tumour characteristics, treatment and outcomes came direct from the treating Units; whether death was breast cancer specific or from other causes was generally well recorded; a number of factors in addition to the standard prognostic factors have been entered and data on factors assessed (notably grade) and outcomes were much more complete than in the SEER; quality assurance has also been applied to clinical, pathological and endocrine data. 

Weaknesses:

  • No project website available that would host all relevant information on the project ( last check: 03.05. 2013) 

 

 

 

PDCAAE

Prevalence and determinants of childhood asthma and allergies across Europe (PDCAAE) was a 4-year project initiated in 2000 with the aim to assess the variation in the prevalence and severity of clinical symptoms and objective markers of asthma, allergic rhinitis and atopic eczema in children living in different study centres in Europe. It also aimed to study the association between potential determinants and the occurrence and severity of asthma and allergies in children in different centres and to make comparisons between and within study centres in Europe. Study centres were identified on the basis of the International Study of Asthma and Allergies in Childhood (ISAAC) Phase I findings.

Governance

  • Funded by the European Commission under the Public Health Programme
  • Coordination center is based in the Department of Epidemiology, University of Ulm, Germany.
  • Contact Person: Prof. Stephan Weiland (Project Coordinator); Tel.:+49 (0)731 50 31060; Email: This email address is being protected from spambots. You need JavaScript enabled to view it. ; This email address is being protected from spambots. You need JavaScript enabled to view it.
  • No project website

Coverage

  • Community based prevalence studies were conducted in 9-11 year old children
  • 16 study centers in 10 European countries completed the study and submitted their data (representing a total of 25.182 children)
  • Children were studied using parental questionnaires, skin examination for flexural dermatitis, skin prick tests, blood samples and bronchail challenge tests. 
  • Laboratory analyses were conducted centrally for IgE (Stockholm), indoor exposures (Utrecht) and genotypes (Oxford). Statistical analyses were performed at the coordinating centre in Ulm, Germany.
  • The participating countries reflect the full range of prevalence rates in Europe, including countries which rank at the top (United Kingdom) and at the bottom (Greece/Albania) of the worldwide distribution of the prevalence of wheeze.

Output and results

  • The observed patterns support findings of ISAAC Phase I (which studied 6-7 and 13-14 year olds).
  • The study has provided an extensive data set on the international variation in the prevalence and determinants of childhood asthma and allergies which is unique in the world.
  • It has provided new insights into the role of many determinants, e.g. lifestyle and genetic factors, and offers huge potential for further epidemiological analyses.

Access to data

Data quality

  • Information on the procedures for data quality is not specified

Linkage

  • No information on the possibility of data linkage from outside perspective

Strengths and Weaknesses

Strengths:

  • Project cooperates with ISAAC project ( http://isaac.auckland.ac.nz/ )

  • The study is conducted according to the Phase II protocol of the International Study of Asthma and
    Allergies in Childhood-ISAAC

  • Possibility to integrate the data in a broader framework of ISAAC phase II study centres worldwide (14 additional study centres in 12 countries such as Brazil Ghana, India and New Zealand).

Weaknesses:

  • No project website available
  • No final report available, information on the project design and outcomes is very scarce

 

 

CCPRB

Cancer Control using Population-based Registries and Biobanks (CCPRB) was a 5-year Network of Excellence project initiated in 2004 with the mission to improve control of cancer by facilitating research linking biobanks and cancer registries. The project involved a systematic quality assurance and continuous development of standards and norms for human sample biobanks in Europe, as well as development of improved integrity-protection standards in the handling of sensitive information in connection with biobank-based research. The samples in the biobanks will be used in large-scale cancer research searching for genetic and infectious causes to cancer, in particular in the areas of breast and colorectal cancer and childhood leukaemia’s.

Governance

  • Funded by the European Union under the Fifth Framework Programme
  • Coordination center is based in Lund University, Dept. of Medical Microbiology at the University Hospital in Malmö, Sweden
  • Contact Person: Prof. Joakim Dillner (Project Coordinator); Tel:+46 40 338126; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: http://www.cancerbiobank.org ( website does not work, last check: 03.05.2013)

Coverage

  • 18 partners in the project from 9 European countries ( Finland, Norway, Germany, Sweden, Iceland, UK, Italy, Poland, Belgium), including e.g. 7 cancer registries, 20 biobank projects and a number of platforms for advanced technologic analysis of biobank samples.
  • The present network has linked large biobank projects with up to 30 years of follow-up and >60.000 prospectively occurring cancer cases and cancer registries with >40 years of population-based registration.

Output and results

  • The project has maintained some of Europe’s largest biobanks and most well controlled registries in regular networking meeting to share competences and resources and promote joint studies and quality improvements.
  • The biobank databases have been linked with population registries for updating on vital status and estimation of population representativeness of data as well as with nationwide cancer registries to generate cancer incidences and tables with total number of prospectively occurring cancer cases in all participating biobanks.

Access to data

Data quality

  • Quality Assurance systems for completeness and accuracy of cancer registration as well as for linkage of registry data and pathology data are now established.

Linkage

  • A comprehensive linkage of maternity cohort biobanks with cancer registries has identified a uniquely large study base (>1000 cases and 2000000 controls) for studies of intrauterine exposures and risk of childhood leukemia.
  • A comprehensive linkage of the Swedish cancer registry and multigeneration registry has enabled a systematic assessment of familial risks for many cancers, including colorectal, prostate, cervical, bone and testicular cancers and non-Hodgkin lymphoma and childhood leukemia.

Strengths and Weaknesses

Strengths:

  • The first formal Graduate School in Biobank-based Epidemiology has been established as a part of the European Program in Public health and Epidemiology

 

 

 

 

ECRHSIII

The European Community Respiratory Health Survey III (ECRHS III) is a third wave of a multicentre, international study initially set up in the early 1990’s to assess the prevalence of asthma and allergy in young to middle aged adults. ECRHS III is an ongoing project initiated in 2010 with main aims to describe change in respiratory symptom prevalence in adults as they age and to determine whether the prognosis of asthma is influenced by any observed change in atopic status.

The first ECRHS I wave was conducted in early 1990’s with the aim to estimate variation in prevalence, exposure to risk factors and treatment for asthma in Europe. The second wave – ECRHS II was a follow-up prospective survey which took place between 1998 and 2003 with the aim to describe the distribution of exposure to known or suspected environmental risk factors associated with the incidence and prognosis of allergy, allergic disease and low lung function. Both waves were funded by the European Commission.

Governance

  • Funded in Europe by the Medical Research Council
  • Coordination center is based in the Department of Respiratory Epidemiology and Public Health, at the National Heart and Lung Institute, Imperial College London.
  • Contact Person: Professor Peter Burney (Project Leader); Tel.:+44 (0)20 7352 8121; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: http://www.ecrhs.org/

Coverage

  • ECRHS I studied more than 18000 young adults from more than 35 centers (predominantly, but not exclusively in Europe), collecting information on health status and a variety of factors known or hypothesized to be associated with the risk of developing asthma and atopy.
  • ECRHS II is a follow-up survey that collected around 13000 (11000 from EU funded centers) short, screening questionnaires asking about asthma symptoms, medical history and occupation, home environment, exposure to air pollution, medicineintake, ect. Data collected from 29 centers in 14 countries (mostly European).
  • ECRHS III is a second follow-up survey that plans to collect data with help of 28 participating centers.
  • Questionnaires, blood samples, lung function testing, etc.

Output and results

Access to data

Data quality

  • Information on data quality is not yet specified ( last check: 03.05.2013)

Linkage

  • Information on data linkage is not yet specified ( last check: 03.05.2013)

Strengths and Weaknesses

Weaknesses:

  • Publications on the website were last updated on 25/09/07 (last check: 03.05.2013)
  • No interim reports available to present the progress of ECRHS III

 

EPIC-CVD

EPIC-CVD is an EU funded large, ongoing pan-European initiative with main objective to investigate the interplay of genetic, biochemical and lifestyle factors on the risk of coronary heart disease, which is the single leading cause of death in the UK and worldwide. EPIC-CVD is based on the successful European Prospective Investigation into Cancer and Nutrition (EPIC) study and uses data of those individuals who have participated in EPIC study and have later developed heart-disease, thus providing a sufficiently large group of cases to allow reliable investigation of the joint effects of genes, biomarkers and lifestyles on heart disease risk.

Governance

  • Funded within the 7th Framework Programme by the European Commission
  • Coordination center is based in the University of Cambridge, Department of Public Health and Primary Care.
  • Contact Person: Richard Houghton (Project Manager); Tel: +44 (0)1223 740 048; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: http://www.epiccvd.eu

Coverage

  • Involvement of 28 partners, including 23 EPIC centers across 10 European countries: Denmark, France, Germany, Greece, Italy, Spain, Sweden, Netherlands, Norway, UK.
  • Data of 10,000 participants of the EPIC study, who have developed heart disease since they joined the study in the 1990's.

Output and results

  • Ongoing study ( last check: 03.05.2013)

Expected Results

  • EPIC-CVD will provide the first systematic comparison of existing major risk scores in a common set of participants across European populations
  • EPIC-CVD will create the first “detailed” risk scores that consider biomarkers of all phases of disease and be the first study capable of incorporating the interplay of nature and nurture for CVD risk prediction across Europe
  • The project will create Europe’s first risk assessment approaches focusing on “modifiable” risk scores with behavioural risk factors and objective lifestyle biomarkers
  • EPIC-CVD will undertake the first systematic evaluation of clinical and public health utility of modifiable and detailed risk scores across Europe 
  • EPIC-CVD will address the broader societal implications of modifiable and detailed CVD risk scores across Europe

Access to data

  • Data most likely restricted to programme participants

Data quality

  • Information on data quality is not yet specified, ongoing project ( last check: 03.05.2013)

Linkage

  • Information on data linkage is not yet specified, ongoing project ( last check: 03.05.2013)

Strengths and Weaknesses

Strengths:

 

 

EUNICE

EUNICE (European Network for Indicators on Cancer) was a two and a half year project initiated in 2006 with the main purpose (1) to establish and operate a network, comprising primary data providers (European Cancer registries) and organizations (ENCR, ACCIS, CAMON, EBCN, ECCSN, CCC, OECI, IAEA, DZFA) with experience in coordination, collection, quality control, standardization, processing and dissemination of data on health status and health systems relevant to cancer, at European level and (2) to provide the EU health information system with updated and standardized indicators of cancer (disease burden and service provisions). In collaboration with the EU Working Parties, it also contributed to refinding indicators in areas related to cancer screening, treatment and outcome evaluation.

 

Governance

  • Funded by the European Commission Public Health Programme.
  • Coordinated through the International Agency for Research on Cancer, World Health Organization, Lyon, France.
  • Contact Person: Philippe Autier (Project Leader); Tel: +33 (0)4 72 73 84 85; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • No project website available. Project description under: http://ec.europa.eu/eahc/projects/database/database_new.inc.data.2004114.pdf

Coverage

  • Data on incidence, population and mortality from 93 population-based cancer registries were collected also from Belgium, Denmark, Estonia, Finland, France, Italy, Ireland, Latvia, Lithuania, Norway, Poland, Romania, Sweden, The Netherlands, UK.
  • Survival data collection through the cooperation with EUROCARE project
  • Indicators to be collated and presented are those defined by ECHI (with input from EUROCHIP)

Output and results

Access to data

  • Information on access to data is not specified, no final report available ( Last check: 03.05.2013)

Data quality

  • Data centralization to be accompanied by evaluation of comparability and a production of data quality indicators. Secure channels to be developed for provision of relevant indicators to the EU.
  • Detailed information on data quality assurance is not provided, no final report available ( last check 03.05.2013)

Linkage

  • Information on access to linkage is not specified, no final report available ( Last check: 03.05.2013)

Strengths and Weaknesses

Strengths:

  • EUNICE builds on the achievements of the former Cancer Programme of the Public Health directorate, such as European Network of Cancer registries (ENCR), European Cervical Cancer Screening Network (EBCCN).
  • EUNICE takes forward the work of ECHI (and EUROCHIP), by moving beyond the creation of lists, to the actual compilation of agreed and relevant indicators, their analysis and interpretation, and to making them widely available.

Weaknesses:

  • Possible risks: Personnel changes, non-participation of the subcontractors, too stringent confidentiality rules in some countries, etc. These to be minimized using preventive and corrective measures.
  • Project doesnt have a website, no final report outlining outcomes of the study is available in internet ( last check: 03.05.2013)

 

 


GBD

The new Global Burden of Diseases, Injuries, and Risk Factors Study (the GBD 2010 Study) commenced in the spring of 2007 and was the first major effort since the original GBD 1990 Study to carry out a complete systematic assessment of global data on all diseases and injuries. A core team of methodologists spearheads the study and ensures its steady progress. Composed of senior researchers from the University of Washington, Harvard University, the University of Queensland, Johns Hopkins University, and the WHO, the core team unites the authors of the original study and engages new leaders in the global health field to design and coordinate research.

 

Governance

  • Funded by the Bill & Melinda Gates Foundation.
  • Coordinated by the Institute for Health Metrics and Evaluation, WA, USA
  • Contact Details: Tel: +1-206-897-2800; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: http://www.globalburden.org

Coverage

  • More than 800 experts from around the world are participating in 44 disease expert groups
  • 291 diseases and injuries
  • 67 risk factors
  • 1,160 sequelae (nonfatal health consequences)
  • Estimates for 21 regions
  • Estimates for 20 age groups
  • Improved methods for the estimation of health state severity weights

Output and results

  • Produced valid, unbiased, and comparable estimates of prevalence of disease and injury cases or episodes and relevant disabling sequelae at the population level for the GBD regions
  • Produced cause-specific mortality by region that collectively sums to all-cause mortality estimates globally
  • Revised the health state severity weight system, a highly debated component of past GBD studies that seeks to measure health state severity
  • Produced estimates of YLDs, YLLs, death, and DALYs for diseases, injuries, and risk factors for 21 regions for 20 age groups and both sexes, for 1990, 2005, and 2010

Access to data

Data quality

  • The accuracy of the data was examined by researchers scouring rows of data for "garbage codes" (misclassification of death in the data)

Linkage

  • Information on data linkage is not specified in the final report ( last check: 03.05.2013)

Strengths and Weaknesses

Strengths:

  • Spearheaded by a team of public health researchers from a number of leading research institutions and engaging epidemiological experts in every study region, the project is collaborative at all levels.
  • GBD provides detailed data on diseases, injuries and risk factors that are essential inputs for evidence-based policy making
  • Project uses user-friends data visualization tools that can display regional and national data from burden of disease studies allowing to compare trends between various raw data sources at the national level. 
  • By visualizing all available data ministry of health officials and researchers can quickly identify unexpected trends in the data that they may wish to flag for further investigation
  • Future updates of GBD will be enriched by widening the network of collaborators and exanding the study to track expenditures for particular diseases and injuries.

 

 

 

 

MONICA

MONICA, Multinational MONItoring of Trends and Determinants in CArdiovascular Disease was a project established in the early 1980s in many Centres around the world to monitor trends in cardiovascular diseases and to relate these to risk factor changes in the population over a ten year period. It was set up to explain the diverse trends in cardiovascular disease mortality which were observed from the 1970s onwards.

Governance

  • The completion of the Monica project was made possible by a generous Concerted Action Grant from the European Commission under its BIOMED programme. The Centres were funded predominantly by regional and national goverments, research counsils and research charities.
  • Coordinated by World Health Organization with Data Management Centre being in  National Public Health Institute of Finland (KTL)
  • Contact person: Prof. Kari Kuulasmaa; E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it. i, Tel:  +358 2952 48639
  • Webpage: http://www.ktl.fi/monica/

Coverage

  • Collaborating Centres were located in 21 countries (Australia, Belgium, Canada, China, Czech Republic, Denmark, Finland, France, Germany, Iceland, Italy, Lithuania, New Zealand, Poland, Russian Federation, Spain, Sweden, Switzerland, United Kingdom, USA, Yugoslavia).
  • Reference centres (in the Netherlands, Switzerland, Denmark, Germany, USA, Norway, UK) coordinated optional studies within the MONICA framework.
  • The total population age 25-64 years monitored was ten million men and women, which were analyzed in cohorts over a period of ten years; retrospectively collected administrative data, routine mortality data (from death certificates) and demographic data ( computerized population registers, censuses)  were collected
  • A standardized protocol was applied across participation centres, in at least two, and usually three, independent surveys conducted on random samples of the study population.

Output and results

  • The ten year data collection was completed in the late 1990s, and the main results were published in the following years.
  • Monica contributed to the development of databases for preventive research and  greatly influenced the development of research in the field of cardiovascular medicine.
  • According to the results of the Monica study risk factors for cardiovascular diseases were identified: arterial hypertension, high cholesterol and nicotine; these allowed selective instructions concerning prevention and therapy that led to a decrease of coronary heart disease and stroke

Access to data

  • The MONICA collaborative publications, the Monica monograph and multimedia Sourcebook as well as Quality assessment reports, data books and the MONICA Manual are available on the website.
  • Access to data directly not available.

Data quality

 

  • MONICA applied strict quality control to the data:
  1.  the data, which were received in the data centers on paper forms, were keyed. Checking for data-entry errors was done by scanning sums of rows and columns of the forms
  2. description of the details of local sources of data and the procedures used to process the data were obtained in collaboration with the collaborating centers
  3. a special method was developed to check the internal consistency of the data for all reported years for each population

 

Linkage

  • Linkage not possible.

Strengths and Weaknesses

Strength:

  • The data are still being used for analysis.
  • The MONICA methodology was increasingly used as a measurement tool for cardiovascular and non-communicable diseases prevention and control programmes by centres within and outside the project.

 

HALE

The HALE (Healthy Ageing: a Longitudinal study in Europe) Project was initiated with the aim to study changes in demographic, lifestyle, dietary and biological determinants of usual and healthy ageing in terms of mortality and morbidity outcomes as well as in terms of physical, psychological, cognitive, and social functioning in 13 European countries. The HALE project started on the 1st of July 2001 as a continuation of three longitudinal studies: the Seven Countries Study (http://www.sph.umn.edu/epi/history/overview/), the Finland, Italy, Netherlands Elderly (FINE) Study (http://www.ncbi.nlm.nih.gov/pubmed/11438408) and the Survey Europe on Nutrition in the Elderly: a Concerted Action (SENECA) Study (http://www.uia.be/s/or/en/1100040823), and was completed in November 2004.

Governance

Coverage

  • Longitudinal data collected in 7047 men aged 40-99 in five European countries (Finland, Greece, Italy, the Netherlands, Serbia) in the period 1959-2000 in the Seven Countries Study. In the period 1988-2000 also data were collected in 3805 men and women aged 70-99 in 12 European countries (Belgium, Denmark, France, Finland, Greece, Hungary, Italy, the Netherlands, Poland, Portugal, Spain and Switzerland).
  • Construction of database with data concerning indicators of healthy ageing (mortality, morbidity, self-perceived health, physical functioning, psychological functioning, cognitive functioning, social functioning), and determinants of healthy ageing (socio-demographic (country, age, gender, socio-economic status, marital status, living situation), diet (dietary patterns, nutrients, nutritional status), lifestyle (physical activity, smoking, alcohol consumption) and biological determinants (blood pressure, serum cholesterol, BMI).
  • The data were collected through physical  examinations, blood sampling, interviews, questionnaires and death certificates.

Output and results

  • Results from the HALE project showed that morbidity and mortality as well as physical, psychological, cognitive, and social functioning in elderly men and women from 13 European countries generally decreased in participants getting older, but improved in subsequent generations.
  • A list of recommendations for healthy ageing were formulated based on the results of the HALE project

Access to data

Data quality

  • First an inventory of all details of the available datasets and the methodology of  data collection was made. Second, decisions were taken in collaboration with all participants  on how to deal with differences in the analyses of data. All participants in the project  delivered local data for the international databases and all details on methodology and variables.

Linkage

  • Information on data linkage is not specified in the final report ( last check: 2013)

Strengths and Weaknesses

Strengths:

  • Availability of longitudinal data of three previous international studies allowed to investigate European differences in specific indicators of healthy ageing and their biological, socio-demographic and lifestyle determinants.

Weaknesses:

  • No project website available (last check: 03.05.2013)

 

EURO-URHIS 2


EURO-URHIS 2, European Urban Health Indicators System Part 2 (2006-2008), was a national and European study looking at health issues for people living in urban areas to allow for the better planning of health services and initiatives. The first phase of the project, EURO-URHIS 1, found that much of the information policy makers need to make informed decision about health was not available through existing sources. Thus, EURO-URHIS 2 was initiated with the goal to develop, test and validate a set of comparable urban health indicators (building upon the work already completed by EURO-URHIS 1 and other related projects) in over 40 cities across the European Union and beyond.

Governance

  • Funded within the 7th Framework Programme by the European Commission
  • Coordination Center located at University of Manchester, UK
  • Contact Person: Dr Arpana Verma (Project coordinator); Tel.: +44 (0)161 275 5206; Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Project website: http://www.urhis.eu/

Coverage

  • EURO-URHIS 2 gathered information by collecting data from routinely available registration data, and by conducting youth and adult surveys at the end of 2010.
  • Two types of questionnaires were used to collect data: The survey questionnaire was developed to collect information about urban health indicators (UHIs) that either (i) could not be obtained from existing data sources or (ii) could provide additional supporting information to that obtained from existing data sources; European Health Interview Survey (EHIS) Questionnaire was used to collect health status, health determinants and health care relevant data.
  • In total, data from 26 urban areas in Europe were available for between-city comparisons and benchmarking.

Output and results

Access to data

Data quality

  • Detailed steps of data collection process, data cleaning and recording are described in the WP6 “Cookbook” report (link above)

Linkage

  • Possibility of data linkage from outside perspective not discussed on the homepage (last check: 24.05.2013)

Strengths and Weaknesses

  • The EURO-URHIS 2 data set is an important tool to improve the health and lives of our urban populations.
  • Policy makers can use the information to prioritize topics for urban health policy and for interventions in an evidence-based way