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EUROPEAN
SITUATION OF THE ROUTINE MEDICAL DATA COLLECTION AND THEIR UTILISATION FOR
HEALTH MONITORING
EURO-MED-DATA
Final Report
R. Lagasse, M. Desmet, M. Jamoulle, G. Correa, M. Roland,
P. Hoyois, Ch. De Brouwer.
December 2001
Project title: EUROPEAN SITUATION OF THE ROUTINE MEDICALDATA COLLECTION AND
THEIR USE FOR THE HEALTH MONITORING (EURO-MED-DATA)
Project number: 1998/IND/2011
Contract
number: SI2.107874
Programme: Community Action on health
monitoring within the framework for action in the field of public health
(1997-2001)
European Commission Directorate General SanCo
Institute: Université
Libre de Bruxelles, Ecole de Santé Publique, Route de Lennik, 808 - CP 596, B-1070,
Bruxelles, Belgique
Tél: + 32 2 555.40.14 Fax: + 32 2 555.40.49
Project leader: Raphaël Lagasse
Project
coordinator: Myriam Desmet
Researchers: Gilma Correa
Corrales, Christophe de Brouwer,
Philippe Hoyois, Marc Jamoulle, Michel Roland.
The Euro-Med-Data (EMD)
project was carried out by a working group under the co-ordination of the
School of Public Health of the Université Libre de BRUXELLES (Belgium),
Department of Health Policies and Health Systems with financial support of the
European Commission, under the Health Monitoring Programme.
EXECUTIVE SUMMARY
The
Euro-Med-Data (EMD) project was conceived to take part in the collective effort
organised on the European Union level in order to establish community health
indicators, to develop a community-wide network for health data sharing and to
analyse and report on this data.
Its objectives
were defined as follows:
Ø
to inventory the medico-administrative data, routinely
collected in 18 European countries at the primary and secondary health care
level, as well as at the occupational medicine level (PHC, SHC, OM);
Ø
to examine this data in terms of data collection process,
type of codification, reliability, mobility, mode of concentration, possibility
of further analysis and/or reports, type of interpretative framework;
Ø
to examine the possibilities of transferring this data to a
European server and that will handle the problems such as format, language,
transfer process, and agreement on designating the person in charge of the data
on a local level;
Ø
to form proposals for feedback of the analysis to the local
health care actors;
Ø
to examine the possibilities for the analysis of the data in
order to perform an epidemiological follow-up of public health indicators and
health monitoring;
There
are indeed, at the present time, very few operational European databases in the
field of Public Health allowing one to use epidemiological health indicators in
order to:
Ø
monitor the state of health of European populations;
Ø
evaluate public health needs;
Ø
assess the use of health care services;
Ø
and, more broadly, to analyse and fully exploit what is
generally meant by Health Monitoring.
However,
every day, in every European country, medical and administrative data is routinely
collected for management or therapeutic purposes, or simply as private memory
files. The use of this data for public health management as well as for
conducting epidemiological studies is often very far from satisfactory.
Furthermore, the lack of feedback to the people who deliver health services
generates frustration and promotes a lack of collaboration.
The
project therefore takes its place in the framework of the hereto accepted 30
other projects. It seems that the EMD project, part of the category of projects
linked to a specific collection system, is not redundant but rather
complementary in relation to the other project categories, and even to the
other ones of the same category.
The
specificity of Euro-Med-Data lies in the focus on routinely collected data. As
we may distinguish different kinds of morbidity indicators (objective,
perceived, expressed, diagnosed,…), it is important to notice their conceptual
interrelations, and to clearly assess their respective complementary positions
in the HIS. Regarding diagnosed morbidity, it is possible to obtain the data from
health providers: the data can be based either on probabilistic samples of
practices (the sentinel practices network is one example), or on a continuous
basis in an integrated routine system. This latter will be the domain to be
investigated by the EMD project in three different settings : primary care,
secondary care and occupational health.
PRIMARY HEALTH CARE
General
practitioners and family physicians form what is commonly called the primary
care level.
In
several northern European countries, as well as in Italy, Portugal, and Spain,
this level plays the role of gatekeeper of the health system. The patient is
not authorised to consult a specialised care level (secondary or tertiary care)
if he/she has not first consulted a general practitioner with whom he or she
generally has a record.
This
‘gate’ system is not present in Belgium, France, Germany, Luxemburg, and
Greece. It is therefore difficult to obtain a common denominator to set an
epidemiological rate.
The
first step of the research has concentrated on the identification of partners
throughout the different countries, i.e. medical doctors and other
professionals involved in the elaboration and organisation of continuous
registration systems for general practice in medicine.
The
question of availability of morbidity indicators through these data collections
is at the heart of the problem tackled by this analysis.
What
are the existing databases in Europe? How are they organised? Can the
information gathered by these various bases be aggregated and continuously
serve as a source of information on the population’s demands for health care as
much as on the answers from the health services?
Despite
certain reservations, the Internet survey form (see chapter II) allowed us to
gather essential information on twelve databases.
This
form was greatly based on work achieved by Dr Job Metsemakers in Holland. In
chapter II, one will find a summary of the information obtained, while the
entirety of the information collected is available in Access (*.mdb), Excel (*.xls),
and text format (*.txt) in the software aid annexed to this report.
The
various terminologies and classifications were the subject of a study published
on the site and featured in the software and annexed to this report.
After
having explored the various databases in a qualitative and quantitative manner,
and outlined the content (chapter III), it seemed constructive to give an
overview of the different terminologies and classifications currently available
in Europe and in use in the EMR’s or other computerised health systems (see
chapter IV).
The
second step consists in trying to collect data from each participating country
to create an international database. This step is quite difficult to address.
Although the participants at the first meeting in Brussels have been very
enthusiastic, only two have made proposal to exchange information. To build a
database in such conditions has no meaning and the research has been continued
by editing information already published on the net.
Common
grounds on methodology of data retrieval and classification tools are lacking
in Primary Care and particularly in General practice at the EU level. Moreover
only some private or semi-public organisations are collecting data on
continuous basis in primary care. The most important ones are mainly for
commercial purposes. Some Member States are producing data trough their own
department of public health or through university settings in United Kingdom,
France, Norway and The Netherlands. However registration tools are quite
different. There is no common standard in the classification field. Some
systems are using proprietary classification, other use ICD or Read codes and
some are using ICPC in its first version. Sharing morbidity data at the PHC
level is consequently not feasible although some data are already published and
accessible through web sites.
(do
refer to http://www.ulb.ac.be/esp/emd/database_links.htm
and http://www.ulb.ac.be/esp/emd/sharing.htm)
The
main conclusion is that, even if data gathering in PHC on the basis of the day
to day work is in process here and there in Europe in General practice, the
utilisation of this data for building up health monitoring indicators at the
level of EU is not to be considered yet at the time being.
Before
this option could be considered, effort has to be made to disseminate
standardised and compatible health information collecting systems based on
international classifications. The group "Data quality in Primary care
" driven by various European researchers is now taking the relay of the EMD study.
This
study concludes by setting up five recommendations on :
the
development of an Open Source approach for what concerns the electronic medical
files software development;
Ø
to favour the management of individual data in computerised
medical files as community health data;
Ø
to favour implementation of standardisation process in
electronic medical record in Europe in order to enhance the quality of data
collection
Ø
promoting European development in the realm of terminologies
and classifications;
Ø
to support the new research group on “Data quality in
Primary care”.
The
secondary health care sector is characterised in Europe by a certain
homogeneity for what concerns the medical data collected routinely in the
hospitals; this is due to the fact that the national classification systems for
hospital data are based on the ICD (International Classification of Diseases),
and the consequent proposals resulting
initially from Fetter’s works in the USA.
The
hospital medical data are collected at the request of the Ministries of Health
with epidemiological and/or financial purposes (financing of the hospitals) in
all the European countries except Germany where these data are not centralised,
but are sent to the sickness-benefit fund of each patient with the aim of
financing the care for each patient, and subsequently covering the costs of the
hospitals.
To
achieve the goals of this study, the methodology used consisted in identifying
partners in each country, in preparing a questionnaire concerning the
characteristics and the contents of each medical data file, and in making a
test of feasibility for the creation of a European database by the aggregation
of samples coming from each country.
At the
end of this study, we can affirm that the objectives are mainly achieved, with
regard to the sector of the secondary care.
Indeed,
for all the participating countries (except Liechtenstein), we were able to
collect information on the hospital medical data recorded routinely in each
country. This information (meta-information) is gathered in summary charts (one
by country).
The
test of feasibility of the creation and the exploitation of a European
database, realised for 11 participating countries, has very encouraging results
because it proves the feasibility of the creation of this European database
with the help of the installation of various procedures on the one hand, and
the definition of certain terms or variables on the other hand. The
exploitation of such database currently allows the construction of 37 health
indicators covering the following fields :
Ø
indicators of morbidity,
Ø
use of the care of health,
Ø
surgical operations and procedures
Ø
and quality and performance of the health care.
The
conclusions of this test lead quite naturally to proposals on short, average
and long term. These should constitute the basis for the continuation of the
work in this field of the secondary care, or hospital care.
The
short-term proposals take again the coordination of the various projects
currently in hand or to come concerning these problems, the methods and the
creation of the European data base as well as the creation of a conversion
chart for the classifications of pathologies and procedures.
The
medium-term proposals relate to the extension of the content of the database in
order to increase the number of indicators which result from it, and to the
procedures for enlarging this database to include the candidate countries.
Lastly,
the long-term proposals concentrate mainly on the evaluation of the
possibilities of connection and linking between the primary care database and
that of secondary care.
The
routine collection of data at work presents certain special features related to
the actual context of health in the workplace, namely:
1. The
existence of a proper legislation;
2. The division
of labour and, consequently, of health risks;
3. Medical
practice at work has a preventive mission, sometimes a therapeutic mission in
the case of health disorders related to the specific exposure and to occupational diseases. It also plays a rehabilitative
role in cases of accidents at work and occupational diseases;
4. On the
European and national level, the organisations centred on the field of health
at work are mainly tripartite structures: government representatives,
employers, and workers.
During
the first phase of the EMD study, the characteristics cited above were
identified and their influence on the feasibility of a continuous collection of
data was underlined.
The
second phase focused on: a) the study of European directives relating to the
health and security of workers; b) their sectoral application in Member States;
and c) the feasibility of their application on the European level.
Globally,
the conclusion was that a great number of routine data are available at the
local level, but it is currently impossible to use them on a regional,
national, and a fortiori an international level given the harmonisation
problems.
Except
for data on accidents at work and occupational diseases, the examination of
these routine databases demonstrates the impossibility of using these databases
as comparable international reference databases in the elaboration of a
European morbidity data bank. They are too different from each other and their
objectives are usually incompatible with the aims of this study.
Finally,
a careful analysis was performed on the various indicators for the sector
proposed by the ECHI project (Kramers et al., 2001). They were extensively
reviewed during the second meeting, on December 5th 2001. This did allow us to
formulate recommendations in order to pursue the reflections on indicators of
health at work.
Short
term: some recommendations are made on the possible improvement of the list of
indicators, specially for health determinants.
Medium
term: they concern a better standardisation of data collection, the
implementation of additional legislative tools to increase the convergence
between countries; a reflection has also to be conducted on the respective
advantages of routine and survey data in this field.
At
longer term, there would be a substantial interest in setting up the
statistical tools allowing a linking and a comparison of data on the worker’s
characterisation within the firm, on the one hand, and the data on mortality
(cause by cause) along with the data related to accidents at work and
occupational on the other hand.
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