Frank Teuteberg, University of Osnabrück. I manage the business accounting and business informatics department,
I am the leader of a large project "Village Community 2.0" or should I say part leader,
there is another director, Mr. Thomas Nerlinger, who organizes the project overall.
In this project we are dealing with a total of four areas of life: on the one hand, mobility, care,
nursing, health and the smart home area. We try to integrate these lifeworlds with the aim
that the older people in the rural area can live as long as possible in their home environment.
That's our primary goal. We believe that we can help through human-technology interactions.
So this project is also about social innovation. Itʼs not enough if we simply give the technology to the citizens
and say "use it". The appropriate structures must already be there and also a so-called "awareness".
You have to be sensitized and to know that you need technology in order to be able to master your everyday life in your home environment.
These are the objectives of this project, and as a business IT specialist, I think we have a key role
in providing these technical solutions, the digital apps, and so on.
In order to integrate these four areas of life, we have a virtual village marketplace, i.e. a platform
on which various apps from these areas of life can be provided. The central basis of this village marketplace
is a digital patient file, because ultimately there is important information, such as vital parameters, deposited with the patient.
What is a digital patient record? On the one hand, we have the vital parameters that patients can measure in their home environment.
For example, we work with diabetics who need to measure their blood glucose levels
up to five to six times a day. They must inject insulin, if they are insulin-dependent.
Nowadays it is possible that even the insulin syringes know how much insulin has been given off and you could also
write that wirelessly into a digital patient record. There are many sensors that help to record various patient data,
vital signs and movement data from a home environment into a digital patient record.
But it goes much further: you go to the doctor, get an X-ray taken
– that too can be stored there. Also, very important is the various information about medicine.
In this context, we have just launched another project, "Pharmacy 2.0", and there we see the pharmacist as a central health guide,
where a lot of information comes together. In everyday life it is like this:
Patient Ms. Meier goes to a doctor, gets a medicine prescribed there, then goes with similar worries,
because the doctor didnʼt help her, to another doctor and gets prescribed almost the same drug
and then mistakenly takes different medications at the same time. Then there can be serious interactions between these two drugs.
It is well known that there are more deaths in Europe from these interactions than from terrorist acts or attacks,
so that's a very serious problem. Another problem is that a lot of medications
are prescribed even though they donʼt need to be taken in this amount.
Too much is prescribed. Having such a centralized drug management system that monitors a pharmacy for a patient has benefits
in terms of drug safety and waste, which is very important because doctors donʼt keep an eye on it themselves.
No doctor necessarily always asks: "What other medications have you been taking?"
We believe that pharmacists can become important health leaders in this field. So much for digital patient files.
But there are a lot of ethical questions, like: What can this lead to?
On the one hand, the patient is completely measured; you know everything about them. How they move,
how they eats, what diseases they have, what medications they take...
If this information gets into the wrong hands, it could be dangerous.
For example, if an employee applies to another company, where they should be selected, and now this company
has insight into this person's digital patient record and knows they are not in good shape at the moment,
then of course that will lead to them not getting hired. Or the employer has insight into the digital patient records of all their employees,
and then they could say: "We prefer not to offer this position, to Mr. Müller
because he has too much sugar, he is a bit confused, and we have observed that his data vital parameters will derail in the next few weeks."
So this leads to massive problems in the work field, it can create dishonest business models,
if these data reaches out to third parties. At some point you will be offered certain lifestyle products,
even though you didnʼt think you need them. This is important to note in this area, it represents another ethical conflict.
Then, of course, in the area of big data, algorithms and
artificial intelligence an use this much data and, can positively monitor the course of a therapy
and calculate certain success probabilities. Then one could say for example: "Mr. Müller
should take this therapy on the basis of our big data analyzes, because this one has a higher probability than another therapy."
On the other hand patients know through the insight of their patient file
that he only has a survival probability of 30% or 40%. Would you want to know that?
Or they find out that you have a genetic defect and you only have a life expectancy of five years and you can not do anything
about it. Is that not a burden for someone to live with for the next five years?
Another problem that we also have in the project "Village Community 2.0" is: How do you manage it?
There are two options: Either patients have data sovereignty, and they control which actor, which doctor,
which nurse, which other profession has insight into the digital patient file or doctors control it.
In the one case, when doctors do it, they have the disadvantage that some data from the home environment
is not recorded into the patient's record: so the daily blood pressure measurement, the daily blood sugar measurement,
this information isn't in the file, although they are very important for the decision-making.
But on the other hand, one has a higher quality when the doctor decides "this is important information
that needs to be recorded into the file." Otherwise, the patient says, "I'd rather not write this into the file,
it could happen that my health insurance learns of it and then adjusts the rate again
to my disadvantage, my employer learns of it, etc." So you hide the knowledge as a patient,
if you have the data sovereignty and this could lead to wrong decisions through AI, this is what you have to consider.
Well, there are some conflicts of interest in cyber security as well. We already notice that
when it comes to declarations of consent. So we have a virtual village marketplace, where various third-party apps
from different lifeworlds (mobility, care, health, housing, etc.) are provided,
and currently every single app that the user brings to their platform needs a renewed consent.
The user has to read 20-30 pages of terms and conditions again.
This is of course very tiring. We think we should work with meta-models, with meta-consent statements there,
and with data agents who help to write the consent form.
A concept would be a kind of consent, which is like a living will. So that one generally deposits his profile:
Who can view which data? Who is allowed to have insight at what time?
Do you have a few restrictions that only this hospital or only this pharmacy may have insight?
Which data is particularly worthy of personal protection? And who gets access in which cases and which escalation levels should this take?
This could be in a meta-model or a cascade model like a declaration of consent as a kind of living will that you give the data agent.
And then this could help if a new app is to be installed,
it can automatically read through the terms and conditions, 30-40 pages, and point out certain areas of concern
where there are conflicts for personal privacy. Then the data agent would point this out and say
"Here's a problem! Do you really want to agree? There will be consequences for you."
So we want to work on that right now. We have a conflict: we want a lot of security, it costs a lot of money
and it is at the expense of the usability, so again authorize, authenticate, enter password, read terms and conditions,
give informed consent, etc. We want to work on that, to increase the usability and reduce costs.
Of course, we have a certain framework, the European Data Protection Regulation is our basis so to speak,
and we go beyond the appropriate ISO standards and standards in the field of quality standards and IT security
that we want to ensure cyber security, but not at the expense of usability.
Another problem we notice is that people are not even aware of what can happen to their data.
I think we need to put more work into the education so that we have more knowledgeable citizens
who can decide what is good for them and what harms them.
Because every provider has different business models and there may also be some extortion: The service provider says:
"We can only offer you the complete service if you give us all your data. If you donʼt give us your data,
then you will not get the best possible service from us." And there you have to think about the balance of this conflict of interest:
What is good or bad for me?