Servizio Comunitario di Informazione in materia di Ricerca e Sviluppo - CORDIS

FP7

EUROREACH Sintesi della relazione

Project ID: 242099
Finanziato nell'ambito di: FP7-HEALTH
Paese: Austria

Final Report Summary - EUROREACH (EuroREACH A Handbook to Access Health Care Data for Cross-country Comparisons of Efficiency and Quality)

Executive Summary:

EuroREACH was a three year coordinated action with seven work packages within three main project phases. Its objective was to improve access to and use of healthcare data and to enhance cross-country comparisons of health system performance. The project was interactively designed to ensure linkages between the WP 1-4 which contributed to a coordinated outcome: the “Handbook to access health care data for cross-country comparisons of efficiency and quality”. The project started by developing an analytic framework for performance assessment that guided the work of all other WP’s by specifying data domains and ensuring consistency of the resulting Handbook which in the second and third phase of the project was transformed into a digitised compendium: the Health Data Navigator (www.healthdatanavigator.eu). The project was coordinated by the European Centre for Social Welfare Policy and Research (Vienna) with a consortium of 9 partners from 7 Member States (AT, DE, ES, F, FI, LUX, UK) and Israel.
During the first reporting period, the methodological framework and guidelines were developed and used for stocktaking and mapping existing data, initiatives and good practices in the respective fields. Specific criteria to review and evaluate the initiatives and data sources were established among all partners allowing consistency across WP 1-4. External Expert Panels (EEP) contributed to the development of the framework, criteria as well as data management issues including data protection, linkage and data governance.
In the second period the project’s primary focus was on the development of the Handbook, the further elaboration and refinement of results of WP 1-4. For example, in WP 1 the methodological framework for performance assessment was revised and amended while WP 2 reviewed and appraised existing data and information systems at European and international level. WP 3 mapped how information systems across providers and health care settings work together and WP 4 reviewed internationally available data and information systems and assessed their relevance to comparative research. At the first Sounding Board Meeting (SBM) in November 2011 in Luxembourg, the experts and EuroREACH partners recommended setting up a digitised form of the Handbook in order to disseminate the outputs of EuroREACH to a wider research community. To make the “Handbook” accessible and to cater to a wide audience the project therefore developed a digitised version, the Health Data Navigator – HDN (www.healthdatanavigator.eu) which was developed by a Working Group Web Platform (WG WP) representing all involved WP’s, led by the coordinator. WP 1 to WP 5 were supported by WP 6 on dissemination and impact monitoring, and WP 7 on overall project management.
The HDN was populated with outcomes from the coordinated work in the individual WP’s. It required an intensive exchange between project partners and with a wide range of experts. In particular, guidance from External Expert Panel participants, Sounding Board Members and other high-level experts in the field of health information ensured close monitoring during preparation, refinements and validation of the Handbook. On the basis of the recommendations from these esteemed bodies and experts the intensity of work increased noticeably during the second and third phases of the project leading to more human resource input in some partner institutions and in particular at the level of the coordinator which was reflected in a corresponding budget shift.
The broad consultation process and various dissemination activities undertaken throughout the project, i.e. the Final Conference, Sounding Board meetings, presentations at conferences as well as participation in different fora to further develop health data management system and related performance issues, have contributed to spread and reflect project findings widely within the international health research community. Beyond this, the achievement of developing the Health Data Navigator ensures a continued dissemination of EuroREACH results and will warrant the HDN’s further use and sustainability beyond the projects’ end.

Project Context and Objectives:
The last ten years have witnessed an increased investment in European and international initiatives and projects to improve health data for cross-country research. The major goals have been to help national policy makers to better assess the health status of their populations and to monitor how health care systems of their countries perform compare with other countries.
There are nevertheless limits to what can be learnt from comparisons at the aggregate, health care system level of analysis. Disease-level analysis with patient level data has therefore been receiving increased attention (e.g. OECD, 2003) allowing a better understanding of entire episodes of care. A major challenge however for comparative patient-level research on efficiency and quality of care provision remains access to comprehensive and comparable healthcare data across countries, providers and care settings.
The project was based throughout on the observation that progress has been slow with producing data that allows the analysis of the efficiency and quality of health care systems (in general and for chronic diseases specifically) to provide patient-centred, disease-based comparisons. This can be observed at different levels: at the territorial (national, European and global) level as well as at the sectoral level.
This is for a number of reasons. First, data that is currently available from European and international databases is typically aggregated data that is of limited analytical power, as it does not allow a direct link between health care resources and activities, costs and outcomes.
Second, available data is often too focused on structural aspects of health care, such as available resources, (aggregate) numbers of procedures and treatments and financial information. Research into “optimising the delivery of health care to European citizens” clearly requires patient-oriented and disease-based approaches of data and analysis.
Third, the organisation of health care systems is often fragmented and there is a general shortage of patient-oriented data across health care systems. The pathways of patients through the system are consequently difficult to research since the way data is organised and collected at a national level usually corresponds to the fragmented way health care services are organised across providers and settings (primary care, specialised care, and hospital care). Much of the available data on health care is reported according to separate “silos” of care provision: ambulatory care versus hospital inpatient care, consumption of pharmaceuticals versus other medical goods. This makes the comparative analysis of efficiency and quality of health care challenging when patients use multiple health care resources for the treatment of their conditions. Possibilities to link data across domains, providers, and care settings are usually limited.
Finally, countries differ substantially in the way they organise their division of labour between these “silos”, and countries are currently at different stages of development to overcome the fragmentation between them. It is therefore often difficult to interpret internationally collected data correctly for comparative performance measurement and analysis, even when progress has been made with comparable concepts, such as by sharing common definitions.
One major challenge for carrying out international research to improve health care policy is the difficulty of pooling together or linking data from very different domains. There is still a compartmentalisation in data collection and possibilities to access them. For example, different groups with different backgrounds work on collecting and analysing cost data, health outcomes, in particular mortality and morbidity data, and information on quality of care or equity of access. However, without linking different types of data and information on health care needs and practices and their costs, we cannot tackle comprehensively many important issues relating to health system performance and health policy. And, last but not least, current practice inhibits health services researchers from securing access to this data in an efficient and effective manner. There is currently still little guidance on access and possibility for comparison of data at the international level.

EuroREACH sheds light on the health information landscape

The above observations led to a number of questions to which this project sought to provide effective and efficient responses.
These are the following:
• What innovative practices and experiences exist in EU Member States as well as in other countries (e.g. Israel, USA, Canada, Australia) to gather data in such a way that it can be linked to each other? What are the underlying approaches to gather and link this data in the way they have been developed? How can linkage problems be overcome? And what possibilities for healthcare performance management result from these experiences and approaches?
• Can commonalities between different national approaches be identified and what are their differences? What (national) obstacles have to be taken into account to overcome the differences? What additional items do we have to construct to allow for comparable healthcare data?
• What do healthcare researchers need to access these, i.e. how can data sources be approached with effectiveness and efficiency and with the wider notion of equity in mind?
• Finally, how can improved access of healthcare data that is provided in a comparative manner be translated into policy advice, i.e. what better systematisation and insight on needs for healthcare on the basis of an informed database can be pursued by policy makers to better organise and monitor respective healthcare systems concerning their management and reforms?

Given the increased number of health data sources and health data initiatives, there is a need to ensure comparability and harmonization of health data for cross-country research as well as access to this data. The purpose of EuroREACH is to address these data challenges by improving access to and use of health care data to enhance comparative research on the efficiency, equity and quality of health systems. EuroREACH aims to meet this need through coordination with and evaluation of international and national health information systems and health data projects.
The objective of EuroREACH was therefore to provide tools to health care researchers to better enable them to access well-organised health care data that allows for comparability at European level. These tools are available in the form of a Handbook which was digitised to become a health care data monitoring tool (www.healthdatanavigator.eu). The Health Data Navigator (HDN) is complemented by guidelines for its use. It thus contains a toolbox of guidance to national and international health information systems, which will be one of the major tangible outcomes of the project.

EuroREACH focuses on person-level data

Over the last decade patient-level data suitable for disease-based analysis has received increasing attention. New collections of information such as electronic health records (EHR), personal health records (PHR) and gene/biobank data repositories are emerging in a number of countries and present new potential data sources to inform decision makers. Thus individual level data is becoming increasingly available, sometimes even publicly, permitting examination of cross country performance of health systems at the level of episodes of care. Recent innovations at the national, European and international level have focused on improving health care information systems to enable comparative assessment of health system performance, in particular by using person-level data.

The following approaches were followed in order to link the various data sets for patients who tend to slip ‘in and out of the health system’:
• Review of the health care information landscape in a selection of EU Member States, which have all approached the data challenges and performance management of health care in innovative ways. These were represented by partners from seven EU countries and Israel. Countries in the sample brought together different ways of organising health care (Nordic country experience, social insurance countries, one new member country). The experience from other EU countries and from non-EU countries that are leading in the field of health information (Canada, US, and Australia) was gathered with the support of External Expert Panels (EEP).
• Review the results of relevant European projects and initiatives to improve the information base for these types of chronic conditions, and of data relevant for studying them.
• Review ways and best practice on how to make use of international frameworks, classifications, and European level data systems. This included coordinating and further developing strategies on how to link data from European data collections to metadata information including qualitative structural indicators. This enabled this data to be understood in its national context, such as by linking back to national sources that allows for a more detailed breakdown and by providing information on the context of national organisations of health care systems.
• The results of these coordination activities were brought together in the form of a systematic synthesis of the findings on data domains needed, types of questions to be answered, types of linkages needed, including recommendations on how to make data accessible (based on best practice gathered from country examples and from European initiatives and projects). These were brought together in a “Handbook to access health care data for cross-country comparisons of efficiency and quality”. The latter, which addresses the health data situation both in individual countries and on a European level, was tested in a generic way by drafting pilot guides to accessing data for two to three pilot countries, following the blueprint and structure of the Handbook, and with a focus on one complex chronic condition – namely diabetes.
• The work sketched out above was based on a methodological framework that systematically addressed the question about what types of data sources, data linkages (including surveys) can be envisaged, and how these relate to a well-defined set of research questions of comparative performance measurement with a focus on questions of efficiency and quality.

A particularly important outcome of this coordination action is the creation of the Handbook, consisting of a digitised web-based health care data monitoring tool, complemented by guidelines for its use. This resource is intended to be a scientifically validated toolbox to foster data access and research that allows countries to learn from the experience of other health systems, taking into account the importance of national contexts. This digitised toolbox provides guidance for researchers, policy makers and other stakeholders interested in cross-country research by:
• Identifying international and national information sources of patient-level, disease-based data allocated on the basis of the EuroREACH performance dimensions
• Presenting in a systematic way relevant EU projects, international databases and health system profiles
• Offering guidance on key data challenges such as data access, linkage and comparability
• Highlighting gaps in existing data to encourage data collection in under-represented areas
The EuroREACH’s creation of this toolbox is an important endeavour for promoting good practice in data use in the area of health. It seeks to add value to existing initiatives and increases transparency in objectives and results of EU funded projects tthrough the analytic presentation of relevant EU projects in the area of health. On the basis of the objectives of this coordinating action EuroREACH encourages exchange of best practices to improve comparative assessment of health system performance and inform visitors of the appropriateness and quality of data they may want to use. Finally, it will help in understanding issues related to privacy and security when using such data for policy purposes.

Project Results:
The main outcomes of EuroREACH can be divided in two blocks:
• EuroREACH produced the ‘Handbook to access health care data for cross-country comparisons of efficiency and quality of care’. The Handbook consists of two major components; the digitised data compendium the ‘Health Data Navigator’ (HDN) and the ‘Health Data Navigator Toolkit for comparative performance analysis’ (Section 3.1).
• The individual results of separate Work packages (WP) provided input to the Handbook and are featured in the Health Data Navigator. However, the more detailed results of the single WP’s including their objectives, methodology and developmental processes will be outlined section 3.2.

3.1 The ‘Handbook to access health care data for cross-country comparisons of efficiency and quality’
The Handbook consists of a digitised web-based healthcare data monitoring tool, the HDN. The initial project’s objective was to provide tools to health care researchers to better enable them to access well-organised health care data in form of a Handbook. This objective has been adapted and enhanced in the course of the second period of the project through the development of a digitised website that features the contents of this Handbook. Over the course of this second period EuroREACH partners created a website that contains a variety of information and tools for health care researchers which fulfils and goes beyond the initial objectives and function of the Handbook. The HDN is an operational prototype that promotes generic standards for conceptualizing performance assessment and for evaluating the quality of relevant data sources used for comparative evaluation of health systems. To facilitate the use of the HDN and to provide a guideline for researchers a ‘HDN Toolkit for comparative performance analysis’ was produced and presented at the project’s final conference. The following section describes in a first step the HDN and its objectives and added value of the HDN as well as its content and structure (3.1.2). In the second part the Toolkit and its contents are summarised (3.1.2).

3.1.1 The Health Data Navigator (HDN)
The findings from the EuroREACH project were used to populate a digital compendium of health data initiatives and information systems, the HDN. This serves as a toolbox for researchers, policy makers and other stakeholders. In line with the project’s objectives the HDN aims to improve the quality of comparative health systems analysis and performance measurement and to encourage cross-country exchange of good practice data use.

The rationale behind developing the HDN was as follows:
• First, while a growing number of national and international organisations collect and provide data on different health and health service domains, the objectives of data collection vary. The conditions for access, including information about the adequacy of data for evaluation purposes, are not always apparent.
• Second, the fast growing ICT capacity to process large data sets has helped to speed up the production of available data and has encouraged a variety of methods to assemble and analyse this data. This often also involves large scale international projects that have produced valuable approaches and results. However, there exists no overview of available data or validated methods to analyse it.
• Third, individual level data is becoming increasingly available, sometimes even publicly, permitting examination of cross country performance of health systems at the level of episodes of care. It is crucial to have a clear understanding of conceptual issues and issues related to privacy and security when using such data for policy purposes.
• Finally, there is a need for a source of good research practices and a reliable information base for enhanced policy making, with the aim of using information to improve health and healthcare delivery. In light of intensified national and global efforts to make health systems sustainable and resilient, knowing how to access and use the fast-growing body of relevant data to best effect is crucial.
The HDN is organized in tabs and offers guidance on pertinent issues in international health research including:
• Analytic presentation of relevant EU projects, international databases and health system profiles
• Performance assessment framework and access to nationally and internationally available data via performance domains for cross-country comparison
• Key health data management issues and challenges such as data protection, data linkage and comparability
• Gaps in existing data to encourage data collection in under-represented areas

The added value of the HDN is the capacity to access databases through relevant domains of performance. Further, the HDN gives guidance on issues relevant to meaningful cross-country comparisons including information sources for patient-level, disease-based data, gaps in existing data to encourage data collection in under-represented areas and key health data challenges such as data protec¬tion, data linkage and comparability.

Another important added value of the HDN is to inform visitors of the appropriateness and quality of data they may want to use. In particular, data sources reported in the HDN are described in greater detail where information exists in regard to accessibility, coverage, quality, linkage and strengths and weaknesses. The HDN is designed to be dynamic to encourage cross-country exchange of best practices. The ultimate aim is to promote generic standards for conceptualizing performance assessment and for evaluating the quality of relevant data sources used for the comparative evaluation of health systems and therewith to improve the quality of com¬parative health systems analysis.

As a prototype website, the HDN was developed to respond to a wide range of research needs and users of health care data: from epidemiologists to economists, policy advisers to academics. Anybody who is interested in health systems should easily navigate the HDN. Effort was made to present available data and information through different entry points that are consistent with the EuroREACH performance framework (WP 1) and information related to data management, including data protection (WP 3). Currently the HDN provides detailed information for EuroREACH partner countries. In particular, databases and related information are identified and widely described in Austria, Estonia, Finland, France, Germany, Israel, and Luxemburg and in the United Kingdom. In the future, data mapping in the HDN can be easily extended to other countries as the architecture of the HDN website is flexible and permits further development through defined reporting standards. The European Centre intends to maintain and if possible expand the HDN and to keep it alive by conducting regular updates of the different content sections. Thus the HDN will remain a valuable source of information for health researchers after the project finishes.

By clicking on EuroREACH partner countries as displayed in light orange in Figure 1 website users may quickly enter country specific inventories of databases mapped along performance domains. Furthermore, existing databases in these countries are mapped by a defined set of disease categories (Infectious, Non-communicable diseases, Mental Health and End of Life care) and by care providers (Primary/Ambulatory Care, Hospital/Inpatient Care, Long-Term Care, Medical Goods), also utilizing performance domains for displaying relevant data sources.
This mapping at the national level is complemented with a comprehensive listing of existing international databases and projects that are judged suitable for comparative performance assessment. While wide-ranging attempts were made to create an inclusive inventory of data information at the international level and in EuroREACH partner countries, database and project assessments could not be provided for all displayed data sets. However, the multidimensional navigation structure of the HDN and database assessment tables are designed to be applied to all data sources. Thus, maintenance of the HDN - including the incorporation of other countries and projects not yet featured in the HDN - is crucial in ensuring a comprehensive inventory of health system information. As policy makers everywhere are increasingly seeking out evidence on the comparative performance of health systems to inform “good practice” policies, we believe that it is crucial that the HDN should be sustained and developed further.

3.1.2 The HDN Toolkit for comparative performance analysis
In order to illustrate the usability, functionality and the content of the HDN the EuroREACH partners produced the ‘Health Data Navigator Toolkit. Your toolkit for comparative performance analysis’ (Hofmarcher and Smith, 2013). The Toolkit has been prepared for the official launch of the HDN at the final EuroREACH conference in May 2013. Its purpose was (i) to present the HDN’s content and added value for improved access to data, (ii) to facilitate the use of the HDN and (iii) to give researchers information and guidance on performance assessment and data management which are both core elements of the HDN. Thus, the Toolkit presents an easy accessible overview of key results and messages of EuroREACH and is interactively linked to the website of the HDN. The Toolkit is publicly available for download at http://www.healthdatanavigator.eu/HDN_Toolkit_Final.pdf

• Chapter 1 describes the objective and added value of the HDN.
• Chapter 2 outlines the central role of cross-country performance assessment and its current state of development. It outlines the rationale and the development of the EuroREACH framework for performance assessment (WP 1).
• Chapter 3 focuses on key issue in organizing data and related data challenges. In particular it provides information about potential data sources for health system comparison as well brief description of data linkage methods and data protection regulation which were parts of WP 3.
• Chapter 4 takes a practical approach in describing the functionality of the HDN and the different entry points through which data and information is made available in the HDN. It outlines the current geographical coverage of the HDN and its potential to extent this coverage. It presents in two case vignettes the potential of the HDN for analysts and researchers. The two case vignettes describe how two notional users, Mr. Curious and Mrs. Highbrow, find their way through the HDN and find relevant information for their research by using different entry points and pathways within the HDN.
• Chapter 5 explores some of the issues which researchers encounter in comparative studies with individual level data. This chapter thus illustrates the main practical challenges in comparative performance studies based on the findings in the case study and observations made in other similar projects, e.g. EuroHOPE, EuroDRG, Managed outcomes, Nordic Hospital Study Group. The prospects for potential new data sources for international comparative performance assessment (e.g. Electronic Health Records, Personal Health Records, gene/biobanks) are given at the end of this chapter.
• Finally, in Chapter 6 recommendations are given that arose from experiences throughout the EuroREACH project. It outlines areas for improvement and potential of the HDN for better access to health care data. Moreover, this chapter highlights gaps were more data and information are needed to enhance comparative research that can also be featured on the HDN. Finally, it outlines the future potential of the HDN and the importance of maintaining it in the future. To sum up, the Toolkit gives important recommendations for improved access to health care data and shows how to access information interactively on the website.

3.2 Results of the individual WP’s
WP 1 Framework and scientific coordination

This Work Package served to coordinate the overall scientific activities, develop and monitor the methodological framework and the pilot-testing approaches used in this project, in particular the methods underlying the draft Handbook. It also developed the overall methodology for selecting and synthesising topics for discussions with EEP’s and for networking and disseminating with project-external initiatives and projects. This was in order to ensure consistency of application and robustness of the resulting Handbook as well as the collection of good practices for research access to health information on a national and European/international level. This refers not only to the overarching methodology and structure of the Handbook, but also to specific methodological approaches used within individual WP’s. Furthermore, this WP provided methodological support to the other WP’s on how to best map their findings to the framework and present these in the Handbook, as reflected in the HDN and its associated Toolkit.

The specific objectives of WP 1 were throughout the project to:
• develop a shared conceptual and methodological framework that identifies the types of data available and how the project links to previous or ongoing European initiatives
• provide the conceptual link between research questions and data needs
• validate and finalize the methodological framework based on feedback from external experts and Sounding Board Participants, as well as project partners
• provide technical support for the design and structure of the Handbook consisting of the HDN and the Toolkit
• incorporate the methodological framework into the HDN
• provide support and coordinate with WP 2-5 on how to best present the results according to the methodological framework on the HDN
• contribute to the HDN Toolkit based on the results of WP 1 and the work carried out for the HDN
• review existing work and data available for qualitative institutional descriptors of health systems considered to be one of the cross cutting data issues; map this information on the HDN

All the objectives highlighted above were successfully achieved during the course of the project through the following tasks:
• Existing international methodological frameworks were reviewed according to agreed criteria
• A shared conceptual and methodological framework was agreed on and developed
• Based on this framework, available, accessible and comparable data was identified which was further analysed
• The framework was developed that provided a link to previous or ongoing European initiatives
• A conceptual link between research questions, data needs and overview of types of data gaps was provided
• The conceptual framework was presented to the external experts and Sounding Board Participants, as well as project partners to obtain comments and make the necessary adjustments in order to meet the needs of the project
• Consultations among project partners were carried out to determine how the conceptual framework should guide the work in WP 2-5 and support to WP leaders was provided accordingly
• Based on the 2nd amendment to the project, technical input was provided on how to best design the HDN according to the conceptual framework
• HDN was designed to reflect the EuroReach methodological framework
• All technical work carried out in the process of drafting the framework was included on the HDN
• Support to all partners on how to best map all the results from WP’s onto the HDN was provided
• Based on agreement with all the partners, selected chapters of the Toolkit were prepared
• Evidence on existing efforts for summarizing and classifying health care systems according to important institutional characteristics was compiled and reviewed; an organizing principle for the “Health System Design and Context” dimension of the methodological framework was defined; qualitative descriptors of health systems which are necessary for cross country comparison of health systems by key dimensions were provided, as well as relevant data sources and efforts to capture and measure these characteristics currently available at the international level; all this evidence was then mapped onto the HDN.

During an initial meeting of the SMT in month 1, the team members agreed upon conceptual guidelines to be applied when searching for a suitable framework to be applied in WP’s 2-5. It was agreed that the framework needed to contain certain elements that would enable the project to categorise the data identified in a useful and systematic manner so that researchers working in the same area/field could easily understand and follow the approach used. The guidelines were discussed and reviewed during the kick-off meeting (month 2). In order to identify which framework was best suited to the needs of the EuroREACH project we reviewed ten widely used international frameworks. The performance criteria being considered for each of the international frameworks, relative to the needs of EuroREACH, were developed during month 2-5, and side-by-side with this work the framework was produced during month 2-6. A first version “Conceptual framework for subject areas, data domains and their inter-linkages” was developed by month 4, subsequently tested with partners working on WP’s 2-4, and uploaded in ECAS on 9 November 2010.

The criteria for the EuroREACH project’s framework were:
1. Is the framework a good conceptual health system framework (HS framework) and health system performance assessment framework (HSPA framework) tool?
2. Are the boundaries narrow enough that they exclude determinants outside the domain that policy makers can influence, but wide enough to include public health and health promotion?
3. Does the framework conceptualize the goals of the health systems in a clear way, with a focus on efficiency, quality, acceptability, effectiveness and health outcomes?
4. Does the framework conceptualize the architecture of a health system in a way that includes the five key elements: service provision; financing; resource generation; leadership governance; and risk factors?
5. Has the framework been used in previous HSPA projects and had it been exposed to and incorporated comments from external review?

During the project meeting in Berlin 16-17 May 2011 (month 15) the framework was jointly revised, expanded and improved by the group. This revised framework built on the work taking place in WP’s 2-4, where its usefulness, strengths and weaknesses were tested over a period of several months. This second deliverable “Draft report on the evaluating framework and methodological approaches as a contribution to the interim report” was uploaded on ECAS on 2 September 2011 (beginning month 19). Coordination was guaranteed by means of e-mail exchange, SKYPE-meetings, telephone conversations, and through the EuroREACH website (http://www.euroreach.net) that facilitated dissemination and interactive exchange. The website presents the WP’s and general topics such as information on the external experts invited to discuss and review the contents of different WP’s working and discussion papers. Working and discussion papers to guide internal debates, definitions and further methodological development were provided on the website and via email exchange with all partners in the project.
Once the guidelines for the conceptual framework were agreed among all the partners and a draft framework was prepared to guide the work in WP 2-5, the framework was presented and detailed feedback was obtained from external experts and all the project partners at the first Sounding Board meeting (SBM) in Luxembourg (November 2-3, 2011). The goal of this meeting was to present all the interim results from all the WP’s to knowledgeable European stakeholders in the area of performance measurement and data management. Based on all the valuable comments from the experts, the framework went through a final validation and was completed.
During the same meeting, project partners discussed the format and the content of the final product – the Handbook. After extensive discussions, consultations and advice from external experts it was concluded that the most useful output would be a digitised web-based healthcare data monitoring tool. As a result, a Working Group Web Platform (WG WP) was created with team members from the different partners and WP’s to ensure that all aspects of the project are covered.
Once project partners agreed on the key structure of the website that would best reflect the content of the project, the first step was to transfer the methodological framework and all related information to a digital format. Once the website coding language was chosen by the work team, a table was created summarizing the set of frameworks reviewed in the process of identifying the EuroREACH framework. Furthermore, for each framework a detailed table was created presenting diverse information on each framework. All this information was then published on the website establishing electronic links between the summary table and each framework page.
Subsequently, the chosen EuroREACH framework was placed on the website in a simplified manner to serve as a multi door access to the different content sites. For each of the chosen dimensions of the framework (e.g. health status) a separate page was created presenting the definition of the dimensions as well as the link to the different data – national, projects, and international databases webpages. This was done with the objective of allowing users to access the information from different points. Additionally, an evaluation of major UK websites was done providing general information that was then posted in the UK National webpage. This information was further used to set up and complete the disease area and care provision webpages. Progress on this work was carried out and controlled with periodic telephone conferences where general parameters were established and publication of material in the website was coordinated.
The SBM in Brussels (October 22-23, 2012) led to very insightful comments from experts which were reflected in improvements in the webpage. A major recommendation concerning the performance dimension was to present the different methodologies used in the literature for performance evaluation. Given this, research was conducted on the performance comparisons methodologies used in the following projects: PERFECT, HEALTHBASKET, EuroHOPE and EuroDRG. Additionally, data was collected on the EuroREACH methodology to incorporate it into the set of methodologies published in the HDN. Following the research a description table was created for each. This table presents information on the objectives, data used, country coverage, methodology and results. The section of methodology was expanded by providing a detailed description of the methodology used in each of the projects.
At the same time, existing evidence was compiled on the available frameworks and classifying systems for qualitative institutional characteristics of health care systems that are considered to be essential for cross-country comparison. While this was initially supposed to be under the cross cutting issues tab, it was later decided that all this information falls within the “Health System Design and Context” dimension of the methodological framework and a separate page was created for it and linked to the international, national and country pages with the relevant data sources. For this page, a classifying system was created that captures the important features of health care systems that potentially explain cross country differences in health system performance. These were grouped under four dimensions: i) health financing and coverage; ii) healthcare provision; iii) healthcare resources and allocation and iv) governance. These dimensions were then broken down into a range of qualitative descriptors that can help define a health care system's design and provide the necessary context for performance assessment.
Furthermore, a glossary section was established by selecting key terms from each section of the HDN. After selecting key terms, several definitions were found for each and the most representative was chosen and published in the glossary site. References for each of the key terms were also posted to provide users with the original source of the definition.
During the project partner meeting in Paris (January 21-22, 2013) tasks necessary for finalizing the HDN were allocated to the different project partners. As part of this WP, the design and content of the ‘Performance’ tab had to be finalized, including how to best present the EuroReach conceptual framework, a review of other performance frameworks available to users of the HDN, a sample of performance measurement methods, collection of key terms for the glossary from all partners to ensure that all the important terms are captured. Here experts were also contacted to obtain their feedback on the definition of terms in the glossary. At the same time, it was important to also include here the methods applied in the EuroReach case study.
Finally, as part of WP 1, the contribution to the HDN Toolit was captured in Chapter 2, Chapter 4 as well as in co-editing of the entire Toolkit with the coordinator. Chapter 2 was titled ’Importance of high quality data for comparative policy analysis’ and covered the current state of development of cross country comparison as well as the methodological framework. Chapter 4 was titled ’Functionality and Structure of the HDN’ and in cooperation with other project partners reviewed the various entry points on the HDN depending on the user type as well as provided tips on how to best use the HDN for different research needs.

WP 2 Coordination with European and international initiatives

The objective of WP 2 was to take stock of previous and on-going initiatives and research projects and to identify the interfaces with these initiatives, and the desirability to establish networking with these to improve access to research into efficiency and quality of health care for patient-oriented, disease-based information in a comparative perspective.
The main tasks according to the DoW were:
• To identify and establish networking with relevant initiatives and projects
• To develop questions that guide the reviews of these initiatives and develop evaluation criteria for good practice examples
• To organise collaboration with and input from EEP and consultations regarding WP 2 with the two Sounding Board Conferences (November 2011 and October 2012)
• To synthesize the findings from the coordination actions under this WP and provide input to corresponding parts of the Handbook (such as on good practice examples)
WP 2 has to be seen within the context of the overall project objectives. Most of the WP 2-specific deliverables were thus integrated into the web-based HDN including the HDN Toolkit.
WP 2 included the identification of initiatives from databases as well as others mentioned by experts from within the projects themselves and within the SBM’s, a thorough review of both the projects’ contents and process as well as deriving conclusions for future initiatives and projects as well as research policy.
All initiatives and projects were only included if they met the following inclusion criteria:
• Comparative cross-country projects/initiatives providing patient-level and disease-oriented data (with certain exceptions for important projects fulfilling only one criterion completely)
• Preferably providing data across several dimensions of the performance framework
• Providing data which is either population-based or patient-based, preferably across sectors, but not excluding that which is confined to one sector (hospitals, GP care)
These were finally presented in the web-based HDN according to different classifications, e.g. by area of the performance framework (see WP 1), by disease, and whether population- or (only) patient-based. Issues deemed relevant for the assessment criteria (i.e. potential best practice elements) were also compiled and made available. In addition, conclusions in the form of strengths/ recommendations and challenges/ gaps were identified and included into the HDN Toolkit.
The exact identification and selection process of relevant projects, comprising inclusion criteria, was explained in the 2nd periodic report. Of all initially identified projects, 49 projects were finally selected to be eligible for inclusion in the HDN.
All initiatives/projects were classified according to (i) the dimensions of the performance framework addressed – i.e. health status, non-health care determinants, health care system performance (quality, efficiency, access), health system design/ context, and equity – and (ii) the specific diseases covered – i.e. asthma, cancer and cardiovascular diseases, diabetes, mental health – and/or whether data allows a disaggregation into disease entities. For both classifications, initiatives and projects were further classified into population-based (covering the entire population or subgroups including health individuals) and patient-based; the latter were sub-classified whether they are confined to one sector (hospital, general practitioners) or whether they collect/ present data across sectors. Information of the international and EU projects is – depending on the table – assessable via performance domains and disease areas respectively.
For further analysis, all initiatives and projects were described and evaluated according to the agreed “EuroREACH appraisal criteria” (see WP 5) in order to both quickly navigate through relevant information and to judge their quality regarding best practice elements, equally easily available via clickable tables:
• Governance,
• Coverage,
• Access to data,
• Outputs and results
• Data quality,
• Linkage,
• Strengths and Weaknesses.
Assessments were made so as to enhance the utilization of project results, including arrangements for securing access to project data for new or extended research. The assessment of data quality broadly aims to identify major issues relevant for data users. While attempts were made to assess projects as comprehensively as possible, not all aspects of the appraisal criteria could be considered. For example, entry errors were only identified if the database was known in great detail by involved EuroREACH partners. Where available, the assessment procedure includes expert opinion on the “strengths and weaknesses” of the database under scrutiny. Where possible and relevant, expert opinion is provided to enable database users to quickly appreciate the strengths and limitations of the data.
Based on the assessment criteria, especially on the expert opinion on “strengths and weaknesses”, the success factors and gaps identified in the first period of the projects could be confirmed, added and refined. They were grouped into “strengths” (or “recommendations” if directed to current and future projects) and “weaknesses” (or “challenges” for future projects to be taken into account and avoided):
Strengths (as well as recommendations for current and future projects):
• Project develops and maintains a project website that contains all relevant information regarding the background, methodology (incl. sample, data collection process, etc.) as well as outcomes of the study (e.g. Final report, List of Indicators) if the study is completed, or updates on the progress of the study (e.g. interim reports) if the study is ongoing (examples: SHARE Project, ISAAC). Ideally this website should also host the project database, accessible for researchers or policy makers (examples: EUROCISS, SHARE).
• Project builds on the basis of a previous successful study and uses its existing database for further investigations (examples: EurHOBOP and EUPHORIC, OECD Study and MONICA).
• Project targets one or several health conditions on different levels, e.g. hospitals, regions, countries, ideally investigating also the quality of care for these conditions and linking it to costs (examples: EuroHOPE, ECHO).
• Project creates a data set which harmonizes data from national health surveys and national mortality registries to allow international comparisons (examples: EUROTHINE, ONCOPOOL).
• Collaborative research networks (or agreements) between similar projects and studies are set up (examples: ISAAC, EPIC, GA2LEN, RARECARE).
• Several European networks collaborate to combine their experiences and efforts within one project (example: EuroTHINE 3).
Weaknesses (as well as challenges for current and future projects to be taken into account and avoided):
• Scarce information regarding the project background, methodology and outcomes on the internet, even upon project completion, and/or no maintenance, updates or even existence of a project website (examples: EPSILON, PDCAAE, EROS) makes it almost impossible for future projects to build upon the results of previously conducted (and funded) projects.
• Many projects report about difficulties for international comparisons of data – due to lack of data, difficulty in accessibility of data as well as differences in data collection among countries (examples: HealthBASKET, EUROCISS, EuroDRG). This experience is currently not systematically used for further developing data collection in the European Union.
• Projects also report about a lack or low quality of even the most basic descriptive data on socioeconomic inequalities in self-assessed health and mortality, small sample sizes if data exists, unlinked cross-sectional designs for mortality data, too low frequency of data collection etc. (example: EUROTHINE). In addition, many countries do not systematically collect information on socioeconomic inequalities in relevant health determinants, such as material living conditions, psychosocial factors, health-related behaviours, and health care utilization (example: EUROTHINE).

WP 3 Access to national data systems & EuroREACH Case Study

The objectives of WP 3 were to map strategies to improve data access for research taken from national good practice based on the framework of guiding questions for policy analysis and the data domains identified in WP 1. This includes the mapping of how information systems across providers and health care settings work together, the types of information being collected and the stakeholders involved, such as data suppliers and end-users. Data sources are evaluated for their level of interoperability. A special focus has been taken towards best practice of data linkages for research: besides the role of electronic records this concerns questions of data anonymisation or synthetic matching techniques, including statistical methods to link records from different data sets/surveys. An EEP meeting was organised on this specific topic in February 2012 in Tel Aviv.
The following tasks were completed in accordance to the DoW:
• To identify relevant actors and procedures for mapping data access in participating countries.
• To select countries outside the project consortium that are relevant for review/input, and organise this by identifying experts to be included in the EEP for WP 3
• To develop a legal chapter on data protection issues at European and national levels. This chapter is included in the HDN.
• To develop questions that will guide the reviews of national practices and develop evaluation criteria for good practice examples at various levels of government
• To organise coordination with and input from EEP

While most health systems collect data for administrative purposes, not all of these data collections are adequate for the needs of health services research. In identifying best practice examples, therefore, we focused on health care systems (countries, geographic regions, or single payers) that have developed and are currently making use of comprehensive, person-level health care databases for research and administrative purpose.
During the first meeting of the EEP, held in Tel Aviv, Israel on May 24-25, 2011, information on issues related to the development of comprehensive regional and national databases for health research including privacy protection, linkage strategies and governance were gathered. External experts reported specifics on existing comprehensive linked data systems in their own countries.
Based on these discussions, a chapter on issues and methodologies on linkage of health data, data comparability as well as data governance was prepared. A summary of the key aspects of the European Data Protection Directive 95/46/EC as well as a systematic overview of national regulations concerning e.g. person level data and linkage activities gives insight into data protection issues. The results of these activities were uploaded to the HDN’s ‘Data management’ sub-sections (http://www.healthdatanavigator.eu/data-management).

Survey of countries participating in the EuroREACH project
The primary focus of the survey was to cover a significant, representative proportion of the national population. For the purpose of data mapping, we developed three survey instruments, the country person-level health services utilization data, the flow chart for assessing candidate databases, and the database passport. The final tools were translated into a web-based questionnaire and were distributed to all participating countries. Data was collected and analysed and the results served as an input into the HDN. In addition, we have collected information regarding the health related databases in Israel and incorporated it into the HDN.
The findings of this WP indicate that many of the European countries already use the data generated in the course of delivery and reimbursement of health care services. The data offers a valuable resource for health services and comparative effectiveness research. However, legal as well as technical issues prevent access to comprehensive data by researchers. On the policy level the following recommendations can be derived as lessons learnt from the "best practices" examples:
• Proactive efforts should be invested in implementing comprehensive data systems rather than ad hoc efforts to respond to a specific research need.
• Sponsorship and governance: Development of a national, comprehensive linked data system requires support at high levels of government. Not only does such a project entail a considerable investment in human resources and information technology, it also requires coordination and cooperation between the many data custodians in the private and public sector. Central funding of activities required for the development and maintenance of linked data sets will decrease the burden on organizations collecting data, thereby improving cooperation, and make the cost of research less prohibitive. The process of identifying “champions” and funding sources would have to occur separately in every country considering cooperation in multi-national research activities
• Harmonize legal and privacy issues related to access and use of person-level health care data for research purposes. This entails establishing legal authority for collecting, maintaining and sharing data systems, including the determination of situations in which informed consent is or is not required, and enacting minimum standards for safeguarding patient confidentiality.
• Develop standardized data structures, coding systems and metadata.
• Develop sophisticated methods of data linkage between files from different sources which take into account the available identifiers.
• Choose a model for data consolidation at the national and international levels—a) central maintenance and processing of national data, b) distributed network, c) creation of linked de-identified files for research purposes
• Establish and maintain an inventory of potentially useful databases
• Extend access to the widest possible group of appropriate users, while implementing safeguards to ensure the privacy of subjects. Safeguards to privacy include strict review and data use agreements, limitations on the individuals who may access identified data, preparation of de-identified/encrypted data sets for outside researchers, prohibitions on publications of identified data by researchers.
• Develop methods to limit access to personal data, such as "distributed health data networks" which allow remote analysis of data sets maintained by different organizations, offering the possibility of multi-centre collaborations while obviating the need for sharing of sensitive data outside the custodial organization
• Look into the near future the use of electronic health records (EHR) will facilitate access to more comprehensive and accurate information required to identify exposures and outcomes of interest in large populations.

The EuroREACH case study on diabetes care
Estonia, Finland and Maccabi (Israel) took part in the case-study on diabetes care. The design of the research protocol, collection and analyses of the data, and writing the paper that was published in Health Policy in June 2013 was done by a team of the partners in these three countries.
The purpose of the case study was to develop and test tools for comparison of performance of health systems between countries by using person-level administrative health service utilization data. The partners tested the feasibility of using administrative data to compare diabetes care and outcomes in these countries in order to learn from the process, to document where problems arise and how to overcome these obstacles.
Even though the intention was to involve more countries, the lack of appropriate data or limited access to such data restricted the case study to three EuroREACH partner countries, making use of data from the Finnish and Estonian health care systems and from the Maccabi Healthcare Services HMO in Israel.

Methods used and experiences from the case study
The experience of the case study shows that there is no way to directly access and use patient-level administrative data for international comparative research. Thus one has to follow the traditional steps from defining the research questions and identifying the data needs according to the availability of data.
In order to mitigate any legal, security, ownership, governance, confidentiality and privacy concerns we decided neither to create a separate central data warehouse nor to share the original data. We avoided the privacy issues by using anonymous data and by performing the data analysis nationally in-house by the institutions owning the data.
We created comparative data for a considerable number of indicators on quality of diabetes care. Despite these evidence-based indicators had been proposed for international comparison, the lack of availability of data had not made it possible to make use of these to the extent of detail shown in this study.
Person-level performance measurement was done with the help of secondary data from existing databases designed to collect financial data. The most obvious advantages of administrative health data are that it covers representative populations and long time-frame and is already collected.
In addition and instead of creating and maintaining single-purpose health data repositories, where analysis options are limited to the extent of detail as defined in the repositories’ architecture, the administrative databases can be used to answer specific research questions by using a stepwise decentralized approach for data analysis.

WP 4 Coordination with European and international data systems
A growing number of national and international organisations collect and provide data on different health domains with different objectives. While this is a positive trend and has resulted in the collection of new information essential for improving health system performance, it has become more difficult to maintain a global view of what is available and what is not.

This WP aimed at reviewing and appraising existing data and information systems at European/international level for their contribution to comparative research in efficiency and quality of health care from a patient-oriented, disease-based perspective. The WP also aimed at establishing a framework for improved meta-data access at international level, in particular to understand potential links to data sources at national levels.

The following tasks have been accomplished in WP 4 according to the DoW:
• review existing data and information systems at the international level to facilitate access to and utilisation of international health databases
• assess critically their contribution to comparative research in performance of health-care systems
• draft a common framework for presenting data/indicators collected in each database
• identify potential links to data sources at national levels and contextual information of European health care systems (institutional/structural indicators) that are important for cross-country comparative analysis
Review of international health databases

The goal of the first phase of the project was to identify relevant European and international health information systems for review. The following criteria were used for selecting relevant health databases and for describing their content (Table 3 lists the databases examined in the project’s first phase):
• Relevance: Only databases for which the primary focus is “health”, collecting/providing primary data are included. Databases providing some limited health data but mainly focus on other subjects and those replicating already available data (in other databases) are not included in the review. Both quantitative and qualitative databases providing information on health care system are revised. A specific review is carried out to identify those databases focusing on chronic diseases and mental illness.
• Coverage/Significance: Only databases produced by well-established international organisations or by recognised international projects are considered. Databases must cover a significant number of countries (no less than 10) and must be used regularly by health/scientific community. We exclude those databases providing only national/sub-national level data. European projects which provide original/unique data on specific aspects of health system performance (with an international significance) are included.
• Accessibility: Databases must enable an easy access to the data for the users and provide the necessary background information for using data.
• Reliability: Information contained in a database must be provided by a well established and transparent procedure for data collection.
• Continuity: The databases analysed must have continuity in the information collected. While no specific time period is required, the database must have some regularity in collection of information and contain several time periods.

Critical assessment of available international data
In order to provide easily comparable, systematic and objective information on selected health databases, we developed a standard “passport” approach. The passport for each database provides a brief description in a standard template in line with selection criteria. Dimensions covered in the passport are the following: background, coverage, data domains, data collection and validation process, user tools, advantages/limitations. Data and indicators available in the database are presented using the performance framework produced in WP 1 of the project. Data content of each database is also summarized in a table to facilitate the comparison between databases.
The first deliverable in M18 of the project provided a systematic review of existing health databases and proposed a first approach for evaluating their relevance for assessing efficiency and quality of health care from users/patients’ perspective.

The draft report has been circulated to the OECD Health Data Team and benefited from their comments and expertise. The work in this work package also benefited from input from invited external experts to the three project meetings and from two informal meetings with OECD Health Data Team.
Transfer of the information on databases into an interactive web platform: Health Data Navigator
During the 2nd phase of the project, consultations and exchanges with external experts organised through EEP’s and SBM’s allowed validating and improving the content of the report with a systematic review of existing health databases produced in the first project phase. The expert’s feedback allowed to update information on databases and to share conclusions on their content with different institutions. The exchange with and input from international experts helped also to shape the set of recommendations for improving research data at national and international level.
During the second and last phase of the project the great part of the effort went into creating a web platform for transferring the information and findings from EuroREACH. All findings from WP 4 were synthesised and reformatted for providing input into the ‘International’ section of the HDN (http://www.healthdatanavigator.eu/international-home). Both quantitative and qualitative health databases and health surveys are tracked and presented. For each international database, two interactive tables are produced. First, the indicators table provides available indicators classified by performance dimensions developed in the Euroreach framework (health status, quality, equity). Second, to facilitate understanding of the content and use of databases the databases were assessed according to the defined EuroREACH appraisal crieteria (WP 2 and WP 5). The assessment tables give the following background information:
• Governance (Who produces and manages the data?),
• Access to database (Is data free to access? The closest links),
• Coverage (geographical, time span),
• Data quality (How is data accuracy checked? Are there gaps in data?), and
• Overall strengths and weaknesses.

Under ‘Surveys’ similar information is provided for international surveys important for health analysis. Moreover, in order to put international and national data in the context of particular healthcare systems, health systems profiles page provides links to information resources on the design and institutional features of health care systems.
The research on databases and the analysis carried in WP 4 allowed to elaborate a set of recommendations for improving data and information on healthcare system for improving comparison and evaluation of health system performance.
Conclusions from WP 4:
Gaps in data coverage
• Data on health care quality is scarce both at national level and for international comparisons. In particular, investment is necessary for improving data and measures on clinical effectiveness and on patient experience with healthcare system.
• Effective care utilisation/provision patterns: With increasing number of patients having chronic and multiple health problems, it becomes more than ever important to identify effective care pathways for improving system performance/care organisation. This requires following patients in the health system with linking data from different providers.
• Patient experience and opinion: Patient feedback is essential for improving health care provision, but data on patients’ views and experiences is lacking in most countries. Encouraging meaningful reporting of patient experience from providers is important. At the European level, enforcing patient surveys using common measures is necessary for guiding regular collection of data.
• Disparities in care utilisation: Very little information is available on the disparities in health care utilisation by different socio-economic and age groups as well as by gender within and across European countries. Specific and standardised surveys on health care consumption by different population groups should be supported. There is also margin for linking different data sources (reimbursement data with surveys) for producing sensible analysis within and across countries.
• Cost data: Measures of health care cost and health expenditure for comparing health system performance are surprisingly poor. The lack of reliable health specific price indexes for comparing health expenditures across countries is a problem. At national level, data on costs of healthcare providers, healthcare expenditure by different socio-economic groups and by disease is particularly difficult to obtain for research purposes. Improving the transparency of this data is necessary for a better understanding of health system efficiency.

Improving Data Quality
In all databases, transparency of definitions of indicators, data sources and methods is essential. International databases may use different definitions, sources and methodologies for the same indicator. For the user, it is essential to find easily the sources and methods used in the database. This will improve the reliability of cross-country comparisons.
In order to progress in the measurement and collection of data in specific domains it is necessary for international/national institutions to take the leadership and encourage data collection and validation in certain domains. The OECD HCQI project, supported by the Commonwealth Fund and the Nordic Council, which has developed a set of quality indicators that have been validated by an increasing number of countries is a good example.
Assuring Data Continuity
Using time series is indispensable for systematic analysis. Most international and national databases have breaks in their time series because of changes in methods or definitions over time. It is important flag these breaks clearly in the databases. Methodological help on how to complete series for researchers who need to work on long time series would be very useful.

Improving Data Accessibility
Good communication of data should be considered as part of data management strategy. International/national databases should be tuned for general public. Some databases or project sites require expert knowledge from the user or has little information to guide users. It is important to render the databases user friendly and to address the needs of users in terms of exporting data, access to charts, maps, briefs, etc.
Administrative databases are rich sources of information but often underused. Often data collected for management purposes of one institution and access to this data for researchers and other institutions is quite difficult. A centralised data management (not ownership) ensuring that the data needs of different policy units and researchers is essential.

WP 5 Handbook to access health care data
The objective of WP 5 was to develop a “Handbook to access health care data for cross-country comparisons of efficiency and quality” (see 3.1) and to transform it into a digitised web-based health care data monitoring tool which explicitly incorporates a patient-oriented, disease-based perspective (see section 3).
The specific objectives of WP 5 were:
• To develop a draft “Handbook” (first phase)
• To provide a draft design of the HDN
• To present a second draft of the Handbook (first version HDN) to the Sounding Board Conference, EEP’s and gather input from consultations with additional project-external experts.
• To finalize the draft version of the HDN and the guidelines for use (‘The HDN Toolkit’) based on the consultations
• Organisation of the Final Conference
• Presentation of the Handbook and the ‘HDN Toolkit’ at the Final Conference

WP 5 started in month 12 as planned and made timely progress in line with the DoW. Even if the WP started officially in month 12, internal discussions started since the very beginning of the project to work towards the objectives of WP 5, since it brings together all results as developed in WP’s 2-4.
During the second project meeting in 23-24 November 2010 in Paris a draft template of the Handbook was developed of how the finalised version will look like. During thorough discussions in which all participants were involved the future contents of the handbook were outlined. Work was divided between the different partners involved in this WP during month 9-11, in such a manner that all partners could bring their specific knowledge and comparative advantages forward. From literature reviews and coordination with inputs from external experts the results from the WP’s 2-4 were gradually integrated into the Handbook. Also two EEP meetings that took place in Luxembourg (June 2011) and in Tel Aviv (May 2011) further added to the contents of the Handbook.

The activities of WP 5 in the second reporting period focused on the revision of the Handbook. At the first SBM in November 2011 in Luxembourg project partners discussed the format and the content of the final product – the Handbook. After extensive discussions, consultations and advice from external advisors it was concluded that the most useful output would be a digitised web-based healthcare data monitoring tool. Thus the experts and EuroREACH partners recommended setting up a digitised form of the Handbook in order to disseminate the outputs of EuroREACH to a wider research community by the means of current information technologies. The Sounding Board Committee and project partners mandated a WG WP which worked jointly on the development of this digitised handbook, the HDN (www.healthdatanavigator.eu). The objectives of WP 5 were thus enhanced and went one step further than initially foreseen in the DoW by providing a prototype web-based compendium, monitoring tool and guidebook to analyse and identify data access for comparative health services research.
As of this decision to feature the handbook as a web platform the WP 5 made timely progress. As an interactive tool the HDN aimed to:
• provide access to a comprehensive inventory of major health databases and information sources on the national and international level catered to people with different research needs,
• guide meaningful comparative analysis of health system performance
• Identify issues related to data access, data protection and data analysis.
• Create a dynamic platform to discuss the issues related to using, collecting and improving health data
Following the recommendation to present the Handbook online as the HDN, the goal was to develop a website where results would be published in a simple but comprehensive manner. This change addressed the need of making project results available for a wider audience. Between M24 and M34 the structure of the HDN was developed, revised and adopted in various steps and feedback loops. The first and second SBM’s and the third and fourth EEP’s as well as other experts provided valuable feedback and input for the final draft of the HDN.
They gave important inputs for the specification of this new web tool. The final draft of the HDN, online accessible at www.healthdatanavigator.eu, is a structured presentation of EuroREACH results, systematically reporting sources of health information according to performance dimensions.
The content for the HDN was provided by the project partners respective their involvement in the WP’s. Throughout a continuous and broad consultation process within the WG WP and with external experts the structure of the HDN, its categories and sections were constantly revised to ensure the highest degree of coherence between the different sections and sub-sections of the website. An important task in this respect was the creation of a unique format across the entire website. This implied applying similar classification structures in each of the sections in order to end up with a uniform presentation across the HDN. Upon the agreements on the structure and categorization, templates and editor guidelines were sent to the partners in order to ensure consistency and harmonization of information featured on the HDN.
As WP leader the coordinating institution ensured that activities and research results of all partners were fed into the HDN. In this context resources of the European Centre for the project were increased to coordinate and work towards the finalization of the HDN, including collection of content, streamlining structure and design as well as conducting technical adjustments. Among many other tasks the following activities were conducted in this context:
• coordinating and conducting upload and allocation of content as well as providing reviews of all sections of the HDN. In particular, the national pages as well as the allocation of the national data sources to the pages ‘Disease area’ and ‘Care Provision’ were supervised and partly accomplished on behalf of some partners.
• The development and upload of content for the different sub-sections in ‘Data management’ were coordinated together with respective partners during several telephone conferences.
• The contents of introductory pages of all sections as well as the HOME page were developed as part of this WP.
• All content was revised and reviewed by the European Centre in a timely process over the last months of the project. This included also checking of styles, links etc.
These activities ensured that the HDN provides and promotes generic standards to data access for comparative health services research. Particular attention was paid to present structured information on the availability of person-level data. This includes show-casing good research practice through the EuroREACH case study on diabetes care where such data was used to compare health system performance across countries. For the first time the prototype website the HDN reports sources of health information on the basis of a performance concept while also presenting issues occurring in the process of comparing patient-level data across countries. To this end, standardization criteria and categorizations were developed to ensure a systematic and consistent presentation of information and the coherence across the tabs of the website. The following categorizations were developed that may enhance also similar undertakings in other research areas:
1) Performance framework
The EuroREACH performance assessment framework which was developed in WP 1 was the basis for the design of the HDN. Data and information contained in the HDN are structured around the EuroREACH performance framework dimensions. All data sources in the HDN are thus reported according to these performance domains which are highlighted with specific colours throughout the website (http://www.healthdatanavigator.eu/performance).

2) EuroREACH appraisal criteria
Where information existed data sources reported in the HDN are described in greater detail through a defined set of assessment criteria. The assessment was systematically done throughout the HDN and draws on the Global Health Data Charter prepared by the World Economic Forum 2011. Table 4 summarizes these assessment criteria and provides broad explanations of what EuroREACH partners considered when classifying databases according to the criteria of interest.
Assessments are also made of international and EU projects so as to enhance the utilization of project results, including arrangements for securing access to project data for new or extended research. The assessment of data quality broadly aims to identify major issues relevant for data users. While attempts were made to assess databases and project as comprehensively as possible, not all aspects of the appraisal criteria listed in Table 4 could be considered. For example, entry errors were only identified if the database was known in great detail by involved EuroREACH partners.
Where available, the assessment procedure includes expert opinion on the “strengths and weaknesses” of the database under scrutiny. Where possible and relevant, expert opinion is provided to enable database users to quickly appreciate the strengths and limitations of the data (http://www.healthdatanavigator.eu/accueil/euroreach/appraisal-criteria)

3) Mapping of national and international databases by care provision and disease area
In order to map the data sources in the HDN for comparative research that focuses on specific diseases or provisions of care, the HDN reports all national and international databases and initiatives by care provision and disease area. The following categorizations were defined to simplify the search of data source:
Disease Areas:
Infectious diseases
Non-communicable diseases
Mental health
End of life care

Care provision:
Primary/ambulatory care
Hospital/inpatient care
Long-term care
Medical goods

This multidimensional navigation structure of the HDN and database assessment tables are designed to be applied to all data sources. Thus, maintenance of the HDN - including the incorporation of other countries and projects not yet featured in the HDN is possible given the defined framework, classification and structure of the HDN. Given the prototype development of the HDN with its well elaborated structural and classifying elements it has huge potential to become an exhaustive inventory of health system information.
Furthermore, this WP has conducted comprehensive research on data governance for the Handbook. Results of this activity are featured in the ‘Data management’ section of the HDN (http://www.healthdatanavigator.eu/data-management). The section brings up issues regarding health data stewardship and sustainability of health data resources including funding sources. Also current development in eHealth and the stand of ethical committees in the EU are outlined.
Part of this WP was also the development of a Toolkit that facilitates the use of the HDN explaining rationale and content of the HDN. In a final step the HDN Toolkit was produced on the occasion of the final EuroREACH conference to give users guidance on usability, content and structure of the HDN. The ‘Health Data Navigator Toolkit, Your toolkit for comparative performance analysis’ was jointly written by all EuroREACH partners. It contains the main results of the EuroREACH project outlining the importance of high quality data for comparative policy analysis as well as data management issues such as data linkage, data protection and data comparability. Further, the Toolkit highlights the EuroREACH case study on Diabetes and provides an overview of the added value of the HDN regarding to cross-country health performance analysis with individual-level data. It provides an outlook for improved access to health care data by addressing potential new data sources and needs for better data in health. In this context, key recommendations from EuroREACH are defined as the HDN as potential to address these current challenges of health data.

WP 5 was also responsible for the organization of the final EuroREACH conference, taking place on 16-17 May 2013 in Vienna ( ). At this conference the HDN and the HDN Toolkit were officially launched and presented (see WP 6). This conference marked the successful end of the project with high-level experts participating and confirming the relevance of the EuroREACH results and in particular the HDN as an aid for comparative health care performance analysis across EU countries. In particular participants discussed the importance of establishing a common platform to increase the sustainability potential of the EuroREACH results, in particular of the HDN.

WP 6 Dissemination and impact monitoring
The activities and results of this WP are summarised in Chapter 4.




Potential Impact:
4.1 Main dissemination activities and exploitation of results
4.1.1 External Expert Panels, Sounding Board Committee and consultations with relevant stakeholders
The project was supported by the EEP and the Sounding Board Committee consisting of high-level experts, researchers and policy makers in the field of health information and health care systems. Throughout the entire project period EuroREACH benefited from valuable guidance from regular meetings of these groups (see WP 6). These experts were involved in the development and the revision of the drafts of the HDN through various mediums, i.e. meetings, telephone conferences and feedback rounds. Due to their continuous involvement and input they are important stakeholders for the dissemination, promotion and the application of the HDN by various stakeholder communities and different partner countries. The strong involvement of experts during the development of the HDN also resulted in the successful dissemination at the level of the European Commission. EuroREACH and the HDN are considered to have become a part of a European Research Infrastructure Consortium (ERIC) on Health Information Systems (HIS) (see 4.2.3).
4.1.2 The Health Data Navigator
The most important medium of dissemination of the EuroREACH results is the Health Data Navigator (HDN), accessible at www.healthdatanavigator.eu developed in the second and third phase (see WP 5). The HDN gathers all EuroREACH outputs including national and international databases relevant for performance assessment with a particular focus on patient-level and disease-oriented data. It provides thus a rich inventory of databases and initiatives and has the important added value that it informs visitors of the appropriateness and quality of data they may want to use. The HDN has remained accessible after the project end and the European Centre intends the keep the HDN alive by conducting regular updates of the different content sections. Thus the HDN will remain a valuable source of information for health researchers with the ready potential to extend its geographical coverage.
4.1.3 Presentations at conferences
• Reinhard Busse presented at 8th World Congress on Health Economics (iHEA) 10-13 July 2011, Toronto: Improving International Comparative Patient- and Disease-oriented Research: Access to Existing Data and Success Factors.
• Maria M. Hofmarcher, ‘EuroREACH: A Web-platform for European Health Data’ presentation at the General Assembly Meetings of the European Centre for Social Welfare Policy and Research, 2-3 July 2012, Vienna (approx. 60 participants).
• Smith, P., presentation on EuroREACH in session: “Concepts and Methods of Health Systems Analysis”, Beijing Symposium on Health Systems, 1 November 2012.
• Gesundheit im Dialog zum Thema "eHealth in Österreich – Realität oder Zukunftsmusik?" Panel discussion organised by Bayer Austria in cooperation with the Industriellenvereinigung, 15 November 2012, Vienna, Austria.
• Maria M. Hofmarcher presented EuroREACH at the annual Meeting of the Health Systems Policy Monitor (HSPM) Network 20-21 November 2012, Rome
• Winkelmann, J., presentation on ‘Improved performance assessment through a Health Data Navigator’ at the 30th ISQua conference, 13-16 October 2013, Edinburgh.
• Maria Noel Pi Alperin will present a poster on EuroREACH results and data protection issues at the Luxembourg International Year of Statistics Conference 2013, Competence Center for Methodology and Statis, Parc Belle-Vue Hotel, 26 November 2013.

4.1.4 Media and tools facilitated dissemination:
• The EuroREACH brochure was developed during the second phase outlining the project’s objectives and activities. The brochure was widely used to inform about EuroREACH and its activities at various events and conferences as well as at expert panels and SBM’s (www.euroreach.net/sites/default/files/EUROREACH_Brochure.pdf)

• In order to increase visibility of the project, the EuroREACH project website was developed (www.euroreach.net). The website was widely disseminated during various presentations of the project. The website was also used to announce and disseminate the final EuroREACH conference.

• Finally, the most important medium of dissemination of EuroREACH results is the HDN, accessible at www.healthdatanavigator.eu developed in the second and third phase (see WP 5). The HDN gathers all EuroREACH outputs including national and international databases relevant for performance assessment with a particular focus on patient-level and disease-oriented data. The HDN remains accessible after the project’s end and the European Centre intends the keep the HDN alive by conducting regular updates of the different content sections. Thus the HDN will remain a valuable source of information for health researchers with the potential to be extended in its geographical coverage.
4.1.5 The Final EuroREACH conference
The final EuroREACH conference took place on 16-17 May 2013 in Vienna with the objective to present key EuroREACH results to experts and key stakeholders in the area of health care data and comparative performance analysis and to involve them in discussing the usefulness of the HDN and the complementing Toolkit for comparative performance analysis. Further, the Final Conference aimed to network on a European level in order to establish a common platform to increase the sustainability potential of the EuroReach results, in particular of the HDN. The conference concentrated on existing challenges in healthcare data issues and the usefulness of the HDN and its Toolkit. The presenters as well as speakers and participants considered EuroReach results as highly valuable and as an important contribution to improve good practice data use. In their views, the HDN is an important instrument that enables users (health researchers, analysts and health policy-makers, etc.) to undertake comparative health care performance analysis across EU countries and beyond. Also, through the analytic presentation of relevant EU projects the HDN increases transparency in objectives and results of EU funded projects. This is seen as an important contribution to ensure that project proposals can be developed on the basis of existing results and that and future project funding under EU programmes is systematically informed. Participants at the Conference urged the EuroReach team to undertake all efforts to make the HDN available on a sustainable basis. Several of the key stakeholders promised their support in this undertaking. The programme of the final conference can be downloaded here:
http://www.euroreach.net/sites/default/files/Final%20EuroREACH%20Conference_Programme.pdf
4.1.6 Publications and other dissemination activities
Publications see ECAS 4.2, Template A1
Dissemination activities see ECAS 4.2, Template A2
4.2 Wider societal implications of the project so far
EuroREACH advances the state of the art for international comparative health system performance assessment by guiding researchers to access and use patient-level data and by informing about existing national and international data pools and methodologies. It has established standards and tools for identification of gaps in available data and the use of person-level data in comparative research. In creating the HDN EuroREACH contributed to develop a scientific evidence base that supports Member States in designing and organising their health information systems. Further, it enhanced cooperation between European health research initiatives. The HDN has a huge potential to become an important tool and inventory of validated and accessible information relating to data management, especially in light of the increasing availability of person-level data. The achieved and expected impact of EuroREACH is presented under the four headings:
4.2.1 Advancing the state of the art of health systems performance research
The results of EuroREACH advance the state of art in the field of health system research and performance measurement. The outcomes promote the scientific evidence base Member States need to monitor their health systems and empower policy and decision makers to better measure the performance of their healthcare system. Future research activities may benefit and be enhanced through the following results:

• Use any of the eight international frameworks reviewed on the HDN in future research or comparative performance measurement activities,
• Apply the EuroREACH framework in future research or comparative performance measurement activities,
• Apply any of the reviewed performance measurement methods used in future research or comparative performance measurement activities,
• Use the list of common institutional characteristics and policies to better understand health system features that may determine variation in cross-country health system performance
• Enhance a common understanding of the structure and design of the health system and the linkages between various domains,
• Establish the grounds for a common terminology across Member States, WHO, OECD and other partners through the HDN glossary of key terms in performance measurement
• Finally, the health system performance assessment framework developed in EuroREACH can be widely used to organize performance information relating the health system’s objectives, functions and processes and assist in mapping existing data onto the different domains.

The validated EuroREACH framework for health system performance assessment has a central role in the HDN. All information in the HDN is organised according to defined performance dimensions. This is an important achievement and added value for future health performance research.
4.2.2 Enhancement of cooperation between researchers in Europe and other geographic regions to promote integration and excellence of European research in the field
Those interested in studying the performance of a health care system need data, which is ideally patient- level and longitudinal, detailed enough to allow analysis on individual diseases about health care utilization, costs and quality across care sectors, and across performance dimensions. While data/ information on a wide range of such issues exists, it is usually confined to one or few condition(s), setting(s), health care or performance dimension(s) and varies considerably across countries. Another challenge is to find, to evaluate the usefulness and to access such information – this is where EuroREACH has its major impact.

Using the HDN for certain disease areas across sectors, researchers might use existing project data pools which targeted the issue on different levels and/or same information from different countries or time by clicking at “International” and “Projects” , where she/he finds a table classifying projects according to this disease area. By triangulating projects, the user may also analyze data across several dimensions e.g. risk factors, development of disease, monitoring, treatment on a comparative basis. The results of EuroREACH facilitate assessment of the scope and quality of available information.

Hence, the HDN helps the user find all EU projects (within our inclusion criteria) that used a certain type of methodology, such as surveys or registry data, and see what information they have produced. The user of the web-based information, incorporated into the HDN, may also find priority research areas by using the information on follow-up projects. Such new projects could also utilize collaborative research agreements with similar (old) projects and studies. An example of these two points is Eunice, which uses survival data collection through the cooperation with the EUROCARE project and indicators which were defined by ECHI (with input from EUROCHIP). Additionally, successful projects can be used as base/prototype for (local) application or encourage similar studies by using existing databases.
New projects should wherever appropriate build on the resources created by previous projects, possibly even through collaborative research agreements with those projects and studies. An example of this is EUNICE (the European Network for Indicators on Cancer), which uses survival data collection through cooperation with the EUROCARE project and indicators defined by ECHI (with input from EUROCHIP). A fundamental challenge common for many projects and initiatives in health care is the issue of sustainability. This is partly due to the time-limited construction of the projects and partly to lack of funding. Initiatives such as the HDN can act as a resource for sustaining interest beyond the formal lifetime of projects.
By documenting contact points for comparative data projects, the HDN assists with finding potential collaborators for cross-country research, in particular when person-level data are used. Even though comparability issues were challenging, the EuroREACH case study on diabetes care showed that use of a consistent methodology and national registries permitted calculation and comparison of several important performance indicators.
Resources such as the HDN act as important mechanisms for avoiding duplication of work, which researchers interested in analyzing the performance of health systems for particular diseases, population groups or settings are advised to interrogate before embarking on studies. The HDN allows the identification not only of relevant international and national databases but also of all relevant EU projects that used certain types of methodology, such as surveys or registry data. For information already collected and processed by others, this resource can obviate considerable time-consuming research.
4.2.3 Transfer of research results into practice to empower policy and decision makers to better manage and reform health care systems
An added value and usefulness of the HDN is its detailed description of data management issues such as data protection, data linkage and data comparability which present significant challenges when accessing national and international data sources and information systems. Issues on data protection and legal provision in partner countries and ways by which different countries across the EU are dealing with data protection are outlined and references and links to current data protection regulations are provided. Valuable information about international data linkage systems that identify and bring together records from diverse data sets containing information on the same person are described in detail. Finally, researchers are offered guidance on data comparability challenges that arise in international comparison of health system performance. Remedies and reviewed methodologies used in several European projects are provided in the ‘Data comparability’ section of the HDN (http://www.healthdatanavigator.eu/data-management/data-comparability).
The EuroREACH case study on diabetes care (Kiivet et al., 2013) and its results contribute to raising awareness of the potential use of person-level databases for efficient and accurate monitoring the performance of health care systems. It mapped both potential databases and the existing ones in the participating countries as well as "best practices" world-wide in using person-level databases. The case study also demonstrated the obstacles and offering methods for linkage of data from multiple sources which is one of major hurdles in comparative analyses.
The diabetes case study showed that by using national registries it was possible to calculate and compare several important performance indicators between case study countries. The methodology seemed promising, but the comparability issues to be solved were many and the process quite demanding and time-consuming, even for experienced experts undertaking the study. Thus one important source of alert included in the HDN is how researchers interested in cross-country evaluations could avoid unnecessary phases, to give guidance, to point towards potential collaborators, and to help resolve the numerous questions arising in the course of the study.
The example from the case study showed that international performance assessment requires sufficiently detailed data specifications to generate standardized data sets and assuring comparability may depend on the detail and extent of information available. In the future, important supplementary sources of data could be sought from electronic health records, personal health records and databanks providing gene and phenotype information. The key will be the extent to which internationally agreed standard definitions and classifications are in place (see recommendations by the World Economic Forum, 2011).

Finally, the case study also served as a ‘test-case’ for the desired features of HDN. While the HDN aims to provide links to all data and information sources relevant for assessing health system performance, it can also be used to provide various types of metadata and important observations concerning the comparability and usefulness of the potential data sources.
EuroREACH has lasting impacts on data and research initiatives of the European Commission. First, its output has informed the Fast-Track Data Project of the Joint Programme Initiative (JPI) 'More Years, Better Lives – The Challenges and Opportunities of Demographic Change', January 2013. The JPI Fast-Track Project aims to describe and assess currently available data sources used for identifying demographic change and seeks to inform the development of the Strategic Research Agenda of the European Union. The JPI ‘More Years, Better Lives’ is an initiative of Member States to enhance better coordination between European and national research programmes. At the 1st Scientific Working Group of the JPI Fast-Track Project in January 2013 in Berlin, EuroREACH assessment criteria for evaluating relevant data sources were adopted by all JPI member countries and by the Scientific Coordinator. By that, the EuroREACH project has achieved an important twinning with the development of the future Strategic Research Agenda. Beyond that, EuroREACH informed the JPI fast-track mapping project in setting up a database with all national and international data sources relevant for demographic change. With the prototype of the HDN EuroREACH thus provided a showcase of a well-structured data compendium containing assessed national and international data sources which is an important inspiration for the JPI fast-track data mapping project.
Second, EuroREACH is considered to be part of a ‘Health Information System European Research Infrastructure Consortium’ (HIS ERIC) which is currently discussed and which aims to serve as a foundation for evidence-based policy and base for research projects. EuroREACH and the HDN were presented at the first meeting of the Ad hoc Core Working Group on an HIS ERIC on 5 July 2013 in Brussels. EuroREACH’s results and the HDN are considered an important input for the development of the HIS ERIC which potentially will become a comprehensive single health information and knowledge system at European level.
4.2.4 Development of the scientific evidence base that supports the Member States to better organise their health systems
By developing a digitised Handbook as an operational prototype website EuroREACH has established a useful tool and knowledge base on European health systems and health data. The HDN seeks to provide guidance to users of national and international health information systems that allow better understanding of the opportunities, strengths, weaknesses and gaps of existing data. As such the HDN serves as evidence base on health data for policy makers and other stakeholders in Member States in various ways:
• The comprehensive nature of the HDN allows the identification of available databases as well as of existing data gaps on national levels. This in turn contributes to improving and further developing the evidence base on health care on which Member States and administrators base their decisions in reforming health care systems for more efficiency and quality of care. Data mapping in the HDN can be easily extended to other countries as the architecture of the HDN website is clear but flexible, and permits further development through defined reporting standards.
• Through the comprehensive mapping of international databases and international projects, Member States are enabled to assess their participation in international surveys and projects. Further, the mapping contributes to better coordination between actions and initiatives taken by the Community, Member States, international institutions (WHO, OECD) as well as service providers and patient organisations.
• The allocation of data by performance domains enables policy makers to identify which kind of health data is needed to better assess health care systems.
• The HDN can enhance the use of administrative databases that are rich sources of information but are often underused in Member States. By this, centralised data management might be promoted which in turn will satisfy the data needs of institutions and researchers.
• The information provided in the HDN contributes to better communication of data availability in the Member States. Good communication on data availability is essential in order to maximise the benefits of comparative information, particularly in light of rapidly increasing IT capacity. Increased communication gives the potential to foster simplified access to international and national databases for researchers, policy makers and the general public.
• Throughout a broad consultation process and support from external experts including high-level experts, policy makers, services providers as well as representatives of patient organisations during the conceptualisation of the HDN, it has become a sound and comprehensive evidence base that includes various perspectives and experiences.
With the HDN EuroREACH has provided a tool and knowledge base for policy makers in Europe and in Member States that provides information on scientific evidence in health care and thus guides policy analysis and design at various levels. Providing information on both data management issues as well as giving an overview of international and national data sources the HDN is an important contribution towards better integration of health information systems.
4.2.5 Further research and follow-up activities
The EuroREACH project has demonstrated the operational feasibility and usefulness of the HDN. Therefore we believe that the HDN should be maintained and developed further in order to meet the following needs and challenges that become more important with increasing data availability. First, the HDN should become an important inventory of validated and accessible information relating to data management, including data protection, especially in light of the increasing availability of person-level data. Second, the HDN could promote the transparency of definitions of indicators, data sources and methods. International databases often use different definitions, sources and methodologies for the same indicator. For the user, it is essential to find easily the sources and methods used in the database. This will improve the reliability of cross-country comparisons. A good example is the OECD HCQI project, supported by the Commonwealth Fund and the Nordic Council, which has developed a set of quality indicators that have been validated by an increasing number of countries. Third, the HDN offers a vehicle for supporting the development of comprehensive linked data systems. Such projects entail a considerable investment in researcher time and information technology, but they also require coordination and cooperation between the many data custodians in the private and public sector. Central funding of activities required for the development and maintenance of linked data sets can lessen the burden on organizations collecting data, improve the potential for cooperation, and reduce the cost of research.
The mapping of information and data during the EuroREACH project has revealed where more high quality data is necessary to conduct sound comparative health system research. While important health data initiatives are under way or already established, such as the Eurobarometer Surveys, data on health care quality is scarce both at national level and for international comparisons. In particular, investment is necessary to improve data on effective care pathways, on patient experience, on disparities in care utilisation as well as costs of care.
 With a growing number of patients suffering chronic and multiple health problems, it becomes increasingly important to identify effective care pathways for improving system performance. This requires following patients in the health system with linked data from different providers and sectors (hospital, ambulatory care, pharmaceuticals etc.). The EuroREACH case study evaluating diabetes care is an important starting point in this context.
 Patient feedback is essential for improving health care provision, but data on patient experience is weak in many countries. At the European level, mandating patient surveys using common measures is necessary to guide regular and comparable collection of data.
 Information on the disparities in health care utilisation by different socio-economic and age groups as well as by gender, within and across European countries, is scarce and fragmented. Collection of improved data on health care consumption by different population groups should be supported, either through enhanced use of existing surveys or through new survey instruments.
 Information on health care costs and health expenditure for particular services and goods is often limited in scope and comparability, even though important efforts are made in this context, such as the joint data collection on health care expenditure coordinated by OECD, WHO and European Commission. At a national level, data on costs of healthcare providers, healthcare expenditure by different socio-economic groups and by disease is often particularly difficult to obtain for research purposes. Data governance and ownership plays a crucial role here. Improving the transparency of this data is necessary for a better understanding of health system performance and efficiency.

List of Websites:

www.euroreach.net
www.healthdatanavigator.eu

Contact:
Maria M. Hofmarcher
European Centre for Social Welfare Policy and Research
Berggasse 17
A-1090 Vienna (Austria)
Tel: +43 1 319 45 05 35
E-mail: hofmarcher@euro.centre.org

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EUROPAISCHES ZENTRUM FUR WOHLFAHRTSPOLITIK UND SOZIALFORSCHUNG
Austria
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