Medical Informatics
Funding Scheme
Networking data – improving health care
1
Contents
Preface
2
Summary
3
1.
Motivation
3
1.1
Researching diseases – for healthy living ............................................................................................................................... 4
1.2
Combining disciplines – for individualized medicine ....................................................................................................... 4
1.3
Using the wealth of data – for improved patient care ...................................................................................................... 5
2.
Funding policy strategies
2.1
Uniting medicine and information technology ................................................................................................................... 7
2.2
Strengthening bioinformatics and medical informatics research............................................................................... 8
2.3
Establishing better, data-based patient care ........................................................................................................................ 8
3.
„Medical Informatics“ funding scheme
3.1
Funding scheme aims....................................................................................................................................................................... 9
3.2
Structure of the funding scheme..............................................................................................................................................11
3.3
Conceptual phase.............................................................................................................................................................................12
3.4
Phase I: Development and networking .................................................................................................................................13
3.5
Phase II: Consolidation and further development ..........................................................................................................14
3.6
Supplementary funding modules .............................................................................................................................................15
3.7
National steering committee......................................................................................................................................................15
7
9
Looking Ahead
16
Imprint
17
2
Preface
The volume of digital data available in medicine is growing at
a rapid pace. A great deal of data is generated in a very short
time, for instance in biomedical research on major common
diseases such as cancer or diabetes. A lot of health information
is also accumulated in patient care records when treatments
are prescribed and their progress is tracked. Medical informat-ics plays a decisive role in this scenario.
The Federal Ministry of Education and Research (BMBF) is
supporting the field of medical informatics under this funding
scheme. Holistic solutions are to establish meaningful links
between the data from patient care and research. Up to now,
this information has mostly existed in many different forms
and only occasionally does any compilation thereof occur.
The aim is to improve research opportunities in medicine and
individualized patient care through innovative IT solutions.
I am convinced that medical informatics offers great poten-tial. The planned exchange of data between research and the
patient care sector will improve diagnosis and treatments for
patients, and the participating clinics will enjoy a clear competitive advantage in the future.
Prof. Dr. Johanna Wanka
Federal Minister of Education and Research
3
Summary
Digitalization is spreading quickly to the health care sector. More and more medi­
cal data – X-rays, medical reports or blood parameters – is available in digital form
nowadays. At the same time, biomedical research is generating ever larger amounts
of data. Together these data have the potential to make great improvements in the
diagnosis and treatment of diseases.
The “Medical Informatics” funding scheme will advance the opportunities of digi­
talization for the field of medicine. The aim is to improve medical research opportu­
nities and patient care through innovative IT solutions. These solutions will enable
the exchange and use of data from health care and clinical and biomedical research
across institutions and locations.
Medical informatics
“is the science of systematic collection, maintenance, storage, retrieval and provision of
the data, information and knowledge in medicine and the health care sector. It is driven
by the desire to achieve the best health care possible”.
(Definition by the German Association for Medical Informatics, Biometry and Epidemiology (GMDS))
Establishing a system of digitalized data and knowledge exchange between the fields
of medical research and patient care will be a lengthy process which has to overcome
many obstacles. This is why the “Medical Informatics” funding scheme is tiered
and modular in its design. Upon proven success during the first phases, the Federal
Ministry of Education and Research (BMBF) will commit and allocate substantive
funding over the longer term.
In an initial step, data integration centres will be set up at selected university hospi­
tals to ensure the technical and organizational conditions which are necessary for a
multi-site data exchange between health care and clinical and biomedical research.
Doctors will be provided with data-based support systems to improve the diagnosis
and treatment of diseases. At the same time medical research will benefit from an im­
proved data and knowledge basis. The developed solutions are expected to create ad­
ded value in many sectors of the health care system and health industry. In the long
term clinics, registered medical practitioners, health insurance funds, and the patients
themselves will be better able to derive practical knowledge from the existing data.
For the patient this means that at any point within the health care system – whether
at one’s general practitioner’s, specialist’s or at the hospital – decisions can be reached
together with the patient which are based on all the relevant data stored in the health
care system and the medical knowledge which can be derived from it.
For now, a digitally networked health care system is still a vision of the future, but ad­
vances in medical informatics will make it possible to take big steps towards making
that vision a reality.
4
1. Motivation
1.1 Researching diseases –
for healthy living
Good health is basic to our well-being. Stable health
holds out the promise of a long, active and independ­
ent life. There is hardly anything that influences our
lives as much as our personal health.
The medical achievements of the past have greatly
improved our health and quality of life. Nowadays
we take it for granted that we will reach old age in
good health. One of the driving factors of the ad­
vances made in medicine was and remains biomed­
ical research. It helps us to better understand health
and illness. This knowledge enables new and better
methods to be developed which can detect and treat
diseases, or even prevent them altogether.
Our health care system will face difficult tasks in the
course of demographic change: in an ageing society
ever more people will suffer from widespread dis­
eases such as cancer, dementia, and cardiovascular
and metabolic diseases. Our goal is to make the best
possible treatment available to each and every indi­
vidual. At the same time, there is a growing pressure
to cut costs in the health care system. We thus face
the challenge of balancing quality medical care and
economic considerations.
We need effective strategies for the prevention, diagno­
sis and treatment of diseases to cope with the challenge
of demographic change. It is why research for healthy
living is one of the six tasks for the future in the Federal
Government’s new High-Tech Strategy.
1.2 Combining disciplines –
for individualized medicine
Researchers have set themselves an ambitious goal,
and that is to develop individualized medicine which
is tailored to the unique symptoms and needs of
every individual. They hope to be able to make more
precise diagnoses and apply more effective treat­
1. MOTIVATION
5
ments on the basis of this individualized medicine.
The treatment of such serious diseases as cancer
is an apt case in point: Just because a certain drug
helps one patient does not automatically mean it will
help the next patient in the same way – even if that
patient, to the best of current knowledge, is suffering
from the same disease.
Health and disease are the result of a combination of
complex interactions in our body. Whether we are
healthy or ill depends for example on the activity of
our genes or on nutrition, stress and exercise. The in­
terplay of these factors determines how very different
the course which a disease can take from one person
to the next. It also means that in order to be able to
predict the effectiveness of a drug with some certain­
ty, we must learn about and understand as much as
possible about the relevant interactions in our cells
and organs.
This is a challenge which two new, interdisciplinary
fields of research are taking on: systems biology and
systems medicine. Systems biology seeks to gain an
understanding of the complex molecular processes in
cells, organs and the organism as a whole. The aim of
systems medicine is to make the knowledge gained in
systems biology usable for the diagnosis and treatment
of diseases. The BMBF started targeting this develop­
ment early on and has promoted systems-oriented
health research by setting funding priorities in the
areas of genome research, systems biology and systems
medicine.
The systems medicine approach has shown first signs
of success, in particular in the treatment of a few forms
of cancer. For example a new genetic test can now
distinguish more precisely between different types of
lung cancer. Thanks to the test treatments can be better
tailored to the needs of individual patients and signifi­
cantly increase survival rates.
Yet despite the progress made, the fact remains that the
drugs prescribed for other types of cancer or complex
diseases such as multiple sclerosis are proving effec­
tive for only a fraction of patients. More and intensive
interdisciplinary research must be done to generate
medical knowledge. The road to individualized med­
icine is quite promising – but the stretch ahead is still
very long.
1.3 Using the wealth of data –
for improved patient care
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Individualized
medicine
The research approach adopted by systems biology
and systems medicine is based on the rapid pace
of technological developments over the past two
decades. High-throughput technologies, known as
“omics” technologies, can now measure thousands of
molecules such as proteins or metabolites at the same
time. The procedures involved are becoming ever
faster and ever more cost-effective: sequencing of the
human genome takes only a few days and can some­
times be done at a cost of less than one thousand eu­
ros. Researchers estimate that the amount of genome
data collected over the past decade has doubled every
seven months. High-throughput technologies gener­
ate enormous amounts of data daily which can only
be analyzed with supercomputers. Interdisciplinary
cooperation is required to translate this data into new
biological or medical knowledge. Systems medicine
6
blends biology and medicine with methods applied
in the fields of informatics, mathematics, physics and
engineering.
At the same time the volume of digitalized data in
patient care and clinical research is also growing.
Digitalization is spreading quickly to the health care
sector. More and more medical data – X-rays, medical
reports, blood parameters – are available in digital
form nowadays.
MEDICAL INFORMATICS FUNDING SCHEME
Researchers and doctors are facing new scientific,
technical and organizational challenges posed by these
enormous volumes of data. It is not only the volume
but also the heterogeneity of the medical data which
is so challenging. Widely divergent types of data must
often be brought together: whereas the growth of a
tumour becomes visible on an X-ray, we may only un­
derstand the cause of its growth once we are also able
to analyze the DNA of its cells.
Even data which reflect the same content can be very
disparate, since differences in the location and quality
of data, data type and format, the “language” used and
standards applied complicate the consolidation of data
from the various sources. Furthermore, IT systems
quite often are incompatible with each other and fun­
damental technical and non-technical questions as to
whom the data belongs to and why one should share it
are being discussed.
So although there is a large amount of medical data in
general, it is often unavailable to the individual user for
purposes other than for which the data was originally
generated. In the event that the data is available, it
is usually very difficult to establish meaningful links
between the different parts.
We can only make the best possible use of the potential
of this vast amount of medical data if we overcome
these obstacles. A precondition for doing so is to im­
prove the exchange of data and knowledge across its
different locations. The distinct and separate spheres
of information which still exist in biomedical basic
research, clinical research and patient care must be
united. Biomedical research data often provides a de­
tailed snapshot of a disease, but health care data helps
to better understand the development of a disease or to
determine what the connections are between different
illnesses in the course of a lifetime.
However, it is vitally important that compliance with
the relevant data privacy standards and parameters is
ensured.
7
2. Funding policy strategies
The BMBF’s current funding policy is aimed at strengthen­
ing biomedical and medical informatics research, improv­
ing links between medicine and information technology,
and speedy translation of scientific and technical progress
into improved patient care.
2.1 Uniting medicine and information
technology
What will health care be like in the future? One trend
has already emerged very clearly – digitalization –
and it is also affecting medicine. Computer-assisted
evaluation of large data sets, applied for instance in
the sequencing of our DNA or in imaging techniques,
will become more and more a part of medical check­
ups. Telemedical applications will help to ensure
good medical care in rural areas too. Health apps for
smartphones are fascinating a growing community
of people who want to track their sport activities and
lifestyle.
Innovative IT solutions are the key to deriving new
knowledge from the burgeoning treasure trove of
information in medicine and to making more accurate
diagnoses and improving treatment.
The development of innovative information and
communication technologies has been a BMBF fund­
ing priority for a long time. The “ICT 2020” funding
programme is currently providing support for research
on handling big data in Germany. The BMBF has been
funding two big data competence centres in Berlin
and Dresden since 2014. These centres are tackling
challenges in the acquisition, handling and utilization
of large amounts of data and are expected to deliver
solutions to the medical field.
By international standards, however, Germany is not a
leader in practical applications of modern information
technology in the health sector. Other countries such
as the US, Denmark and the Netherlands are leaders
in the introduction of telemedical services, electronic
exchange of data among doctors, or the availability of
electronic health records.
8
This is why Germany’s Federal Government laid the
groundwork for the development of telematics infra­
structure in the health care sector by drafting a bill on
e-health (E-Health Act) in 2015. Following the intro­
duction of the electronic health card, legal regulations
will now promote the speedy introduction of valuable
applications for the health card. Telematics infrastruc­
ture can be further developed in the future to enable
secure and quick sharing of data between the medical
care sector and research.
The “Medical Informatics” funding scheme will further
advance the use of innovative IT solutions. In a first
step, the suitable technical and non-technical condi­
tions for data exchange and the multi-site synergetic
use of data from research and health care will be estab­
lished at university hospitals.
2.2 Strengthening bioinformatics and
medical informatics research
Together with the volume of medical data, the de­
mand for new support systems in research and health
care will also increase. Automated systems will be
needed to aggregate and analyze the various different
data and to derive new knowledge for the diagnosis
and treatment of disease. It is the task of medical
informatics to develop these systems. Medical in­
formatics describes, analyzes, models and simulates
medical processes with the aim of generating new
knowledge, optimizing health care and research
activities, and supporting the various players in the
health care delivery system.
The innovative strength, competitiveness and con­
nectivity of our research and health care system will
depend more and more on efficiency in medical
informatics. We will therefore strengthen research in
medical informatics and training for young scientists.
The BMBF can build on past success in the support
of bioinformatics and medical informatics research:
the ministry has supported systems biology research
since 2004 which includes the development of mathe­
matical and bioinformatics tools for data analysis.
This repertoire of methods forms the basis for the
analysis of large sets of biological and medical data.
MEDICAL INFORMATICS FUNDING SCHEME
The German Network for Bioinformatics Infrastruc­
ture was established in early 2015. The expertise and
services which it provides will benefit medical research
in particular. The BMBF’s “Integrative data semantics
in systems medicine” funding priority places special
emphasis on medical informatics by funding projects
under the measure which aim to make available the
wealth of medical knowledge which exists in the form
of unstructured data (e.g. in medical records). Drawing
on the progress made so far, the BMBF will further
strengthen bioinformatics and medical informatics
research.
2.3 Establishing better, data-based
patient care
The aim of medical informatics is to assist and
improve decision-making and other processes in
medicine. This requires not only the development
but also the trialling and implementation of medical
informatics tools. Comprehensive strategies for their
use in clinical practice are needed, and both doctors
and researchers from various disciplines must work in
close cooperation as these strategies are implement­
ed. Suitable IT infrastructures must be created and
new work processes adopted. The aim is to make use
of data from research and patient care in an optimal
way for the sake of improving the treatment of illness
and disease. In other words, when the data is used in a
meaningful way, the right person in patient care will
have the right information at the right time.
The “Medical Informatics” funding scheme will play
a role in utilizing the opportunities in medical infor­
matics to establish an improved, data-based system of
patient care. Not only will innovative IT solutions be
developed, they will also be applied to the direct benefit
of patients.
9
3. “Medical Informatics” funding scheme
The Federal Government’s Digital Agenda aims to make
use of digitalization’s innovative potential in medicine
too. The BMBF is making medical informatics a priority
topic. The funding scheme is part of the Health Research
Framework Programme of the Federal Government and
specifically addresses the fields of action “Focussed
research into major diseases” and “Individualized
medicine”.
3.1 Funding scheme aims
Introducing digitalized exchange of data in the health
care sector will be a lengthy process which will have
many obstacles to overcome. This is why the funding
scheme for medical informatics adopts a tiered ap­
proach and is modular in design. If the first phases are
successful, the BMBF will commit substantial funding
over the longer term.
Initial focus will be directed on university hospitals
because this is where the closest links between patient
care and clinical research exist. Further partners may
include research institutes, higher education institu­
tions, private clinics, and businesses in the IT, pharma­
ceutical, biotechnology or medical technology sectors.
Application of the solutions beyond university hospi­
tals must be factored in from the very beginning. The
innovative potential of start-ups and SMEs should be
tapped for new technical developments.
The aim of the funding scheme is to improve research
opportunities and patient care with IT solutions. These
solutions will enable the exchange and use of clinical
and biomedical research and patient care data across
institutions and sites.
The innovative IT solutions will help researchers and
doctors to exploit the potential of the burgeoning
10
volume of medical data. Data from research and health
care are to be translated into new knowledge for use
at the patient’s bedside. Health care data will also be
integrated into the research process. By the same token,
current know-how and verifiable research outcome
will become available more quickly in everyday clinical
practice. The long-term goal is to enable every patient
to receive treatment that is as custom tailored to their
unique clinical symptoms as possible.
Interoperable IT systems are absolutely essential for
the electronic data exchange between different sites
of research and patient care. Existing technologies
and established standards should be applied to the
extent possible. Researchers and doctors must also be
encouraged to share data for the benefit of society at
large. Because of the sensitive nature of the medical
data concerned, multi-site processes to guarantee
data privacy and security must be agreed and imple­
mented.
The ever greater amounts of data which are being
generated cannot be analyzed in any meaningful
way without specialized data scientists who are both
skilled in applying state-of-the-art tools in infor­
matics and familiar with medical terminology. This is
why the “Medical Informatics” funding scheme also
envisages increased training of junior researchers in
data sciences. The higher education institutions and
university medical centres which receive funding are
expected to also engage in their own research, teach­
ing and further training activities to ensure that use
of the new IT tools becomes regular practice. All in all,
medical informatics in Germany will develop into a
progressive field.
Aims of the funding scheme
● Improve research opportunities and patient care
through innovative IT solutions (initially at university
hospitals)
● Intensify the exchange and sharing of data between
research community and health care delivery system
● Position medical informatics as a progressive field in
research, teaching and continuing education
3. “MEDICAL INFORMATICS” FUNDING SCHEME
11
3.2 Structure of the funding scheme
The guiding principle of the funding scheme is the de­
velopment and implementation of IT solutions which
can improve research possibilities and patient care in
university hospitals. In an initial step, implementa­
tion of technical and organizational solutions will be
funded at a few select locations. A subsequent transfer
to further partners will be prepared through the early
involvement of these partners. All of Germany’s uni­
versity hospitals will benefit in the long term.
As a key element of the funding scheme, data inte­
gration centres are to be set up and interlinked by the
university hospitals and all the other partners which
want to input research or health care data. The data
integration centres are responsible for:
●
●
●
●
●
●
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Creating access to local data in the organization
Quality management of input data
Compliance with data protection provisions
Guaranteeing data security
User and rights administration
User support and training
Creation of interfaces for data exchange with exter­
nal partners and data collections
The research and health care data will not as a rule be
stored and held at the data integration centre itself
but instead at the local sites where the data is gener­
ated. The data integration centre must be an organi­
zational unit whose competences are clearly defined.
High-ranking persons should be part of its manage­
ment and the centre should be equipped with all the
necessary human and infrastructural resources. The
data integration centres should work in close collabo­
ration with the scientific and medical personnel who
have an interest in using and analyzing the data which
is generated.
Another key element of the funding scheme is the
development of IT solutions for specific applica­
tions (use cases), which will be aided by the multi-site
exchange of research and patient care data. Examples
of use cases include: IT-based support in the diagnosis
and choice of treatment of rare diseases, recruitment of
patients for clinical trials, personalized cancer treat­
ment, or some other function in research and patient
care practice. At the end of the first funding phase these
specific use cases should demonstrate the added value
of data exchange and the developed IT solutions for
researchers, doctors and patients. Successful solutions
can then be transferred to further university hospitals
and partners in the subsequent second funding phase.
Medical Informatics Funding Scheme
Support activities
Ergänzende Fördermodule
Supplementary funding modules
Conceptual phase
2016–2017
Development and
networking phase
2017–2021
Consolidation
and further
development phase
2022–2025
Audit
Audit
12
Many critical issues in this context must be addressed
before work can start on the development of the data
integration centres and IT solutions. A nine-month
conceptual phase will focus on these issues. The most
convincing plans will be implemented in a four-year
development and networking phase (Phase I). If
the development and networking phase delivers the
envisaged results, the solutions which proved suc­
cessful can be applied on a broader scale and at other
locations during a subsequent consolidation and
further development phase (Phase II). Parallel to this,
additional funding modules are planned, for which
separate announcements of funding regulations may
be published as necessary. A national steering com­
mittee will provide guidance during the implementa­
tion of the funding scheme (see 3.7 below).
The modular, tiered structure of this funding scheme
allows for flexibility to adapt to the achieved results,
technical developments and the requirements which
arise in the ensuing years which cannot be predicted
with certainty from the present perspective.
MEDICAL INFORMATICS FUNDING SCHEME
3.3 Conceptual phase
Consortia which intend to share and exchange data
from biomedical research and patient care will receive
funding during a nine-month conceptual phase. Each
consortium must involve the participation of at least
two university medical centres to avoid the generation
of stand-alone solutions. Possible further partners in
the consortia may include higher education institutions,
research institutions, private clinics, or other health care
providers and industry. Consortia are encouraged to
include start-ups and small and medium-sized enter­
prises (SMEs).
During the conceptual phase, the consortia are expect­
ed to draft strategic plans for data sharing and data
exchange within and beyond the consortia. They must
determine the terms and conditions of data exchange,
identify the type and volume of data to be exchanged,
and develop processes for compliance with data pro­
tection provisions. The consortia are expected to draft
3. “MEDICAL INFORMATICS” FUNDING SCHEME
13
plans for quality management and the quality assurance
of new and existing data. The interoperability with
existing data collections and IT solutions both in Ger­
many and abroad must be guaranteed. At the end of the
conceptual phase, the consortia must declare how they
plan to implement the rules which they established to
govern the use of data and data exchange within and
across the consortia.
The consortia will develop one or several concrete use
cases during the conceptual phase. Verifiable milestones
must be established which are able to demonstrate the
functional performance and usefulness of the IT solu­
tions in the development and networking phase which
may follow.
Each participating institution which wants to make
research and patient care data available on a large scale
must develop a strategic plan for a data integration
centre. This plan should include a provisional plan for
the continued operation of the data integration centre
beyond the four-year development funding period. A
roll-out plan for the later expansion of the emerging
IT solutions to further use cases and other institutions
must be developed as early as in the conceptual phase.
The application of solutions beyond university hospi­
tals should be factored in from the beginning.
The consortia are also expected to develop future-ori­
ented strategies for medical informatics at the partici­
pating higher education institutions. Among others this
might include the establishment of new professorships
for medical informatics and support groups of junior
researchers, as well as own activities in research, training
and continuing training.
3.4 Phase I: Development and
networking
Funding during the four-year development and net­
working phase will be concentrated on a few selected
consortia. Funding worth a total of about €100 million
will be allocated during this phase.
Every funded university hospital will build up a data
integration centre during the development and net­
working phase. If, in addition to the university hospitals,
other partners in the consortia input large amounts of
data (e.g. research institutions, private clinics), each of
these partners must also establish its own data integra­
tion centre.
Beside structural establishment of data integration
centres, IT solutions for one or more clearly defined
use cases will be developed, implemented and tested.
An external audit conducted six months before the end
of the development and networking funding phase will
determine whether the consortia have 1) successfully
created measurable added value for research or patient
care through the organizational and technical solutions
which they developed, and 2) made data exchange across
the consortia possible.
The consortia are expected to recruit further univer­
sity hospitals as network partners for the purpose of
preparing the dissemination of successful solutions
later on. By the end of the first year of the development
and networking phase, each funded consortium must
ensure that at least three further university hospitals
which do not already belong to one of the funded
consortia have become involved as network partners.
14
These university hospitals should demonstrate an
interest in adopting the consortium’s IT solutions in
the subsequent consolidation and further development
phase. In preparation of the adoption, the network
partners should be involved early on in the design of
the IT solutions without having to establish their own
data integration centre.
The consortia are expected to implement their strat­
egies to strengthen medical informatics. The BMBF
is offering funding for two junior research groups
to every participating higher education institution
as a foundation for and an incentive to establish new
professorships in medical informatics. The junior re­
search groups, designed to collaborate for five years, are
eligible to receive funding as soon as the vacancy for
the professorship has been filled and a suitable junior
research group leader has been named.
Each consortium must have an adequate management
structure in place. It is recommended that the manage­
ment comprises at least one internal steering body and
an advisory body whose membership includes external
individuals which, among others, is responsible for
ensuring an international profile. Representatives of
the network partners should also be included in the
consortium’s management structures.
3.5 Phase II: Consolidation and
further development
If the set objectives of the development and network­
ing phase are achieved, a second funding phase to
build on its success may follow. Successfully demon­
strated solutions will be transferred to further univer­
sity hospitals and perhaps to other interested clinics
or research institutions. To ensure that researchers,
doctors, and ultimately patients benefit from the
advances to the greatest extent possible, further
players (e.g. in-patient care or private clinics) should
be included in the data exchange. The BMBF will also
provide substantial funding to successful consortia
for this phase.
However, federal funding must only be considered as
start-up funding. The consortium partners are expect­
ed to contribute matched funding for the continued
operation of the data integration centres. This is why
the conceptual phase must already reflect some consid­
eration of the issue of continued operation, for which
plans must be firmed up in due course and be based on
financial commitments.
3. “MEDICAL INFORMATICS” FUNDING SCHEME
3.6 Supplementary funding modules
Further funding modules can be introduced in stages
as early as the development phase. The BMBF will con­
sult with the national steering committee on medical
informatics to tailor the modules to meet the needs of
their target groups.
One priority goal of the funding scheme is the avoid­
ance of stand-alone solutions. Therefore, funding for
networking projects between the consortia including
new partners is planned. International cooperation
projects may also be considered to ensure compatibil­
ity at international level. Additional training measures
for junior researchers, perhaps through funding for
summer schools are another target of possible funding
modules.
As soon as data exchange is considered functional, the
development of further IT solutions can move ahead
to improve research opportunities and patient care in
other use cases. The innovative potential in industry
can also be utilized in this context.
Supporting scientific research will track technological
developments both in Germany and abroad. In principle,
the IT technologies which are available today are able to
realize the envisaged exchange of research and health
care data. Developments should therefore be based on
existing technologies. The BMBF will nevertheless be
15
following technological developments closely. Societal,
social and ethical issues which may arise can be ad­
dressed under the BMBF’s funding priority “Ethical, legal
and social aspects of modern life sciences (ELSA)”.
3.7 National steering committee
Coordination processes which reach beyond the scope
of the management structures of the individual con­
sortia will be needed to prevent stand-alone solutions.
A national steering committee will be established for
this purpose.
The national steering committee’s work will be support­
ed by a managing office. The BMBF is therefore funding
an accompanying project in parallel to the conceptual
phase to support the steering committee during this
time. The main aim of the accompanying project is to
assist in the necessary cross-consortia coordination of
e.g. uniform data standards, IT interfaces and data pro­
tection strategies. Working groups will be set up which
meet at regular intervals throughout the conceptual
phase. The working groups will be supplied with infor­
mation relevant for their work, for example concerning
● data collections in Germany and abroad for which
interfaces and interoperability must be created,
● existing standards and norms, and
● current trends in technology
16
Looking Ahead
Entirely new possibilities will open up if the BMBF’s
funding is instrumental to the successful establishment
of research and health care data exchange among uni­
versity hospitals. The solutions which are developed are
expected to deliver added value in many sectors of the
health care system.
New forms of data and knowledge exchange between
biomedical and clinical research would reduce the
complexity of the innovation processes for coope­
rating biotechnology, pharmaceutical and medical
engineering companies: the development of drugs
and medical devices could become more focused and
more efficient as new approaches in treatment and
diagnostics become more readily available.
In the long term, the different players in the health
care system – clinics, registered medical practitioners,
health insurance funds, and patients themselves –
will be able to derive from existing data the practi­
cal knowledge which they need for their work and
which meets their needs. These players can, in turn,
add to the stock of medical information with their
experience and the data which they generate. For
the patient, this means that at any point within the
health care system – whether at the family doctor’s,
specialist’s or hospital – decisions are taken jointly,
based on all the relevant data stored in the health
care system and the medical knowledge which can
be derived from it.
For now, the digitally networked health care system
illustrated here is still a vision. But advances in medi­
cal informatics enable big steps towards making that
vision a reality.
At the campaign day to think health anew on 22 August
2015 (Gesundheit neu denken), a gathering of 60 citizens
discussed the impact which current trends like digitali­
zation will have on how we manage health and illness in
2030. We aim to continue this discussion in the “Digita­
lization and Health” expert forum which, as a working
group of the High-Tech Forum, will oversee the further
development of the Federal Government’s High-Tech
Strategy. The expert forum will shape visions of the
future of what digitalization could mean for prevention,
diagnosis, treatment and aftercare in medicine. These
visions of the future will be discussed among a broader
public to gain an idea of stakeholder hopes and fears
early on. In so doing, we can sharpen our focus on the
future before we continue to shape it.
Further information is available at:
www.gesundheitsforschung-bmbf.de/de/
medizininformatik.php
17
Published by
Federal Ministry of Education and Research
Division Development of Methods and Structures in the Life
Sciences
11055 Berlin
Orders
In writing to
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E-mail: [email protected]
Internet: http://www.bmbf.de/en
or by
Phone: +49 30 18 272 272 1
Fax: +49 30 18 10 272 272 11
October 2015
Printed by
BMBF
Layout
W. Bertelsmann Verlag, Bielefeld; Christiane Zay
Photo credits
canstockphoto
Productionperig: p. 9
Forschungszentrum Jülich/R.U. Limbach: p. 7
getty
ariel skelley: p. 4
Guido Mieth: p. 16
Jose Luis Pelaez Inc: p. 2-3
iStock
Squaredpixels: Cover photo
Press and Information Office of the Federal Government,
Steffen Kugler: preface (portrait of Prof. Dr. Johanna Wanka): p. 2
shutterstock
sfam_photo: p. 13
Thinkstock
Fuse: p. 12, p. 14
PIKSEL: p. 15
Trish233: p. 6
Wavebreakmedia: p. 10
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