My name is Armin Will, and I am in the IT staff of the University Medical Center Schleswig-Holstein.
We deal with the IT strategy of the hospital, we are also pursuing approaches to further developing
existing systems and attaching great importance to the protection of our systems, in particular through the impact on cyber security,
which have also become very public in recent years in our IT infrastructure.
The University Hospital Schleswig-Holstein is indeed the biggest provider in the north with two locations, in Kiel and Lübeck
- once independent university hospitals, are now combined into one university hospital;
not only outwardly, but also internally through IT support.
We only have one data center for both sites, and in the last few years we have collected a vast amount of clinical data
from our patients
that is needed in for the billing process, which, as digitalisation has progressed,
has led to our having very large clinical records for our patients.
On the other hand, through the two universities, namely the CHU in Kiel and the UZL in Lübeck,
we have massive inquiries and demands such as
"Wow! This data is worth gold! We would like to research, we would like to use this data,
in order to promote and advance clinical studies" from the collection of data of different origin,
of varying degrees, especially in the clinical environment, in the university environment are also many special cases,
that come to fruition, because other houses cannot treat them.
So there is great interest in researching and using this data.
We would like to support this on the part of IT, but have the problem that, of course, none of the patients
could agree to such a data usage in advance
when it comes to issues that arise today.
Of course, data collection and use of clinical data is possible with the consent of the patient, but this requires
that the patient is interviewed at the time of data collection and this can rarely be done retrospectively.
Both the clinical researchers and we from IT want a better and more flexible legal framework
to actually handle this "treasure of gold" that we have accumulated.
At the moment it is true that we have good data, which theoretically we could also analyze up and down,
but we legally canʼt because the so-called consensus by the patient simply doesnʼt exist.
I think that is primarily a political problem. This has been noticed by the politics as well.
With the Medical Informatics Initiative, which have started, an attempt is being made to break up exactly this problem a bit,
so that data can be made available in larger contexts at least once across all locations.
In this context, work is also underway in the individual consortia to agree on appropriate consents with the patients,
who are even more detached from the commitment to very specific research questions. After all, we also know
that sometimes research can only be created when data is available and you can look at it,
regardless of the fact that I can have a primary, clear scientific question.
We from the UKH want to support this issue, and are in the process of joining a consortium
in the hope that we will be a good partner with the immense volume of data we have,
and achieve added value for the consortia as well as for our researchers.
Not only does research want to draw on this immense amount of data, but it goes even further:
Even in current patient care, there is a great need to have access to information outside
the hospital, especially in non-routine circumstances.
At our Center for Rare Diseases in Lübeck, for example, a project is currently being initiated, which attempts
to connect a database center-spanning with other German centers that also treat rare diseases.
Of course, the trick is not to know which other patients are being treated in the other centers,
but to find out if there are certain indicators that tell me when treating my patient
at an early stage that this is a case that actually represents a rare disease.
Rare diseases are not rare because they are rare, but because they have very rare
combinations of certain conditions.
And identifying them is, of course, a tremendously important momentum for the patient, as he trusts
that the doctor will recognize the particular disease, in this case an extremely rare one, which there may be only ten cases Germany,
and come up with a proper therapy.
And to achieve this, it is imperative that data be linked beyond the treatment centers.
It must be possible for the attending physician to make a request in the data pool of the hospitals of the Federal Republic of Germany,
for example
"I have a patient here who is male, has a certain age, has the following diagnoses, we tried the following therapies, and
he has responded in this way. Are there similar cases nationwide? And if so, how were they treated?
Which risks are there? What complications have others discovered?
How can the treatment be specifically optimized for this patient?"
That would be a question that would be much more effective in accessing the patient data and profitable for each individual.
And unfortunately we have the problem that we cannot do that yet.
The reasons are as follows: The core problem is actually our very confining privacy in patient data,
because there is indeed the necessity that the patient explicitly agrees to the usage of his data,
explicitly signes this consensus. It would actually be much more effective and overall more profitable for our society,
if we implement a concept of data protection as it is implemented in Estonia, for example,
there is a basic access to the data in a central database and I can disagree as a patient at any time,
i.e. I have an opt-out and thus a coverage of nearly 95% of usable data,
because only a very small percentage of the Estonians actually contradict the use of his data.
On the other hand, I believe that it can also go in this direction for us if the awareness of each one is clear:
This is not about abuse of my data, but it is about the benefit of everyone from the pool of everyone.
So a solidary service that we have to provide as a society.