>> Prof. Härter, the 17th German Congress for Health Care Research, which you chair as congress president, has the motto “Research, design and care in a person-centered manner”. Why not “patient-centered”?
It makes a difference whether you focus on the person or the patient. The idea of patient-centered care dates back to the 1990s. Now, around a quarter of a century later, it is time to look at people, individuals, and people. This change in focus is important because it moves from looking at the patient in general to looking at the individual person. This view is not new, it has just been forgotten in the last few decades. It goes back to the 1970s, when the bio-psycho-social model was developed. With this model, you look more broadly at the patient, with all of his symptoms, his illness, but also his environment and thus try to take the person as a whole into account.

Does that work?
In reality, at least the studies carried out in recent years show that there are a lot of problems in the implementation of comprehensive person-centered care and individual-oriented care.

Here one should perhaps analyze what barriers there may and certainly are likely to be.
The question of participation in care plays a particularly important role here. But first we should – and this is what we will do at the DKVF – discuss what is actually meant by the term person-centered care.

Surely there are already definitions.
Four years ago, in a systematic review, we distilled concepts and models from the literature that described the terms “patient-centered” or “patient-/person-centered care” in scientific articles. We found over 400 articles that deal with these topics. If you analyze and condense all of these articles, you come up with 15 dimensions that describe the fundamental aspects of person-centered care.

Which are they?
On the one hand, this is access to care, then its continuity and quality. Factors that are also relevant here are the interaction between different professions and the basic attitude of the practitioners, the caring team and also the patient. Keywords for this are practitioner-patient communication and interaction, whereby we come back to the bio-psychosocial model and how this is taken into account. At this point, questions arise such as: “How is information conveyed to patients?”, “How are patients involved?”, “Are family and friends taken into account?”, “How is emotional and physical support provided?”

What happens if you answer all of these questions?
At some point, step by step, you will arrive at a coherent model of a comprehensive concept of person-centeredness in healthcare.

Certain aspects of which have already been implemented – at least in part – while others have not.
Researching this is the task of health services research. The task is anything but trivial, which is clear when you first look at the question of “timely and appropriate access to care”. It then becomes necessary to operationalize the access issue, i.e. to make it investigable. It quickly becomes clear that it is not that easy to say where we stand in general or even in particular. This also applies to the question of participation in decisions, on which there are so far only a few studies that can give us reliable information about where we stand here.

For example, the RKI's health monitor, which, with its report on “Health in Germany”, which was last published in 2015, provides a good overview of the current status and development of health in the German population.
It was described here in 2015 that patients are very little involved in decisions. When asked whether they had ever experienced shared decision making, or SDM for short, over two-thirds of respondents said they had never experienced it. Accordingly, SDM practically does not occur in the reality of care, regardless of whether a patient goes to a family doctor or a specialist. This is also confirmed by our team's own studies, which use a complex actual analysis to show how little SDM has been implemented in the oncological indication area to date.

Why is that? Is it because of the patient?
Personally, I don't think the problem is on the patient side, but rather on the provider side. Physicians and care teams should actively offer shared decision making to the patients they care for so that they can learn about the opportunities for participation that may exist for them. What's more: you should invite them to do it and explain to them why it makes sense.

However, that takes more time.
Not necessarily. Studies show that SDM does not take more time, but rather brings with it a different structure of the conversation. Of course, the whole thing has a lot to do with attitude towards patients and appropriate professional attention. And it's no coincidence: This type of communication needs to be trained, but this has only been done in a few places so far.

So when it comes to this question, medical training and further education is lagging behind what is actually possible?
SDM has so far been enshrined in few curricula. In Hamburg, we have implemented this type and attitude of doctor-patient communication as a model in our curriculum at the medical faculty.

Some medical faculties will have to reorient themselves to the 2020 master plan.
The master plan will definitely bring this issue forward. However, it will still be a few years before graduates who have learned this become active in care and this approach becomes widespread in clinical care.

How teaching is carried out is entirely up to the respective medical faculties at the almost 40 study locations.
So far, the topic has gone something like this: All students are always asked a few questions in the physics course, at least about the model of patient participation. For the others, a lecture or seminar is organized in courses with corresponding offerings. We have developed a program with a lecture and seminars lasting several hours, i.e. real conversation training. This is completed with an exam in which you have to demonstrate what you have learned in practice with a simulated patient. So the range is very wide.

What barriers are there?
This is primarily a question of the attitude of healthcare professionals, but also one of the incentives in the system.

Couldn't there also be disincentives?
Possible. In cancer care, for example, centers should adhere closely to guidelines and therefore to certain quotas. But treating according to guidelines does not necessarily mean that this is in the interests of the patient with their preferences for or against treatment. Patients may have good reasons why they do not want to accept a guideline-based treatment recommendation.

To what extent is shared decision making even reflected in the guidelines?
For example, this model was formulated in the National Care Guideline “Unipolar Depression” as the basis for every decision made with patients, so there is a corresponding guideline recommendation for it. Incidentally, other guidelines have now also been followed, for example a decision-making aid for stent or bypass surgery has been developed for coronary heart disease.

Why so hesitant?
The guidelines must carefully consider how to formulate diagnostic or therapeutic recommendations. It also makes a difference whether SDM is formulated as an offer or as a “should”.

However, this is not just a semantic question as to how it is ultimately formulated in a guideline recommendation.
Correct. Possible patterns of action can be derived from this. That's why, when it comes to this seemingly purely semantic question, we have to think very carefully about how recommendations can be formulated in such a way that they enable and stimulate person-centered care. This discussion is ongoing and will probably keep guideline developers busy in the near future.

Is there any evidence that SDM has any effect?
There is plenty of evidence. When it comes to participation in decisions, there is a Cochrane review that has been updated over the years with over 100 randomized controlled studies. These have often examined how the doctor-patient consultation changes when medical decision-making aids are used. In the direction of positive outcomes for the patients, but also for the treating doctors, because satisfaction with the doctor's contact and the decision increases.

This is exactly why you invited two foreign speakers to the 17th DKVF.
On the one hand, this is Prof. Dr. Tom Delbanco from Harvard Medical School in Boston, who co-founded the OpenNotes project, in which patients can read and comment on their medical reports and, where it is used, a new quality in doctor-patient communication is evident. On the other hand, this is Prof. Dr. Glyn Elwyn from Dartmouth College in Hanover, New Hampshire. He is one of the pioneers in the development and implementation of decision support and SDM.

The two speakers describe their best practice models?
Tom Delbanco is one of the mentors for the patient-centered approach. The article that he and other renowned quality researchers - such as Don Berwick from the USA and Günter Ollenschläger from ÄZQ - wrote back in 2001 was entitled: “Healthcare in a country called PeoplePower: nothing about me without me.”1

This “nothing about me without me” became a motto that led to the OpenNotes movement?
Exactly. Here, patients have access to their health data that they have never had before. But until now it was quite unclear what actually happens when people see all of their data at once.

This also applies to all patient files that are currently being introduced or at least tested or that have been available from private providers for a long time.
Basically, “OpenNotes” is nothing more than a platform on which the various information that the patient generates or triggers as they move through the medical system is bundled, whether these are doctor's letters, laboratory or other vital data or diagnostic values.

What can a normal patient do with this?
Delbanco and his team have found that patients perceive this data access very positively. Of course, not every patient can do something with it, and probably not every patient will want to do something with it. But they can at least deal with it if they want to.

Access to personal data alone can be a kind of declaration of independence...
... and above all a positive one, which Delbanco will present with his previously published healthcare science findings. These are particularly interesting for us in Germany, where various health insurance companies are starting to implement different approaches that work similarly to OpenNotes.

And Prof Glyn Elwyn?
He is very close to us because we have developed a lot together with him and we have close scientific collaborations.

Who is we?
This is an international group of colleagues from the USA, Canada and Germany, but also from other European countries (e.g. Netherlands, France) and Australia, who are working on the implementation of patient participation in healthcare with a strong focus on shared decision making. Glyn Elwyn is closely associated with the development of the term SDM. He helped develop this model and had a strong influence on it. Dartmouth is very committed to this issue. This enabled many projects to be developed in which various decision-making aids are used for medical consultations. Research is also carried out there into how doctors need to be prepared and trained, how such projects can be implemented, but also how SDM processes and their results can be measured.

It sounds a bit as if we are still at the very beginning of SDM and actually need to do implementation research.
The concept is well developed, but the implementation is lagging. But other countries are not much further along than us. Of course, we can always learn from each other and should do so, especially when it comes to developing appropriate decision-making aids.

Which raises the question of whether it's better to develop the materials yourself or license them?
In Germany people often think that they should develop everything themselves. The discussion has not yet come to an end as to which institution would really be capable of doing this.

The IQWiG?
On behalf of the G-BA, the institute has developed decision-making aids for various preventive measures for cancer and has many years of experience in the development of evidence-based health information.

How about the Health Literacy Action Plan?
This also plays a role because it requires basic evidence-based information. But one could also think of the ÄZQ, where short information for patients and practicing doctors is produced, or the specialist societies in the AWMF could also focus on the parallel development of decision-making aids when developing guidelines.

Wouldn't it be an important message from the upcoming health care research congress to demand the necessary networking?
We need more networking between institutions. But we also need a joint effort and, above all, a common will to implement person-centered medicine approaches across the board. Our congress also offers a good opportunity to discuss these topics with important institutions and experts.

At what level should this be demanded? The self-government does not do anything that it is not told to do.
The congress and its events will give weight to this demand for greater implementation.

Knowing full well that this task will cost a lot of money.
Correct. If you want to produce appropriate materials for the 100 most important decision-making situations in medicine, you have to invest a large sum. In addition, there are possible expenses for training or further education measures and quality assurance.

This could also be a larger Innofonds research project in the area of health services research.
That would be a good option. A project on this is currently being funded at the University Hospital in Kiel (note: see page 42). Another option is docking with the guideline development, as decision trees are often described in guidelines.

As a kind of doctor-patient appendix.
We could expand the professional guidelines and the existing patient guidelines to include relevant therapeutic or diagnostic decision aids, including the necessary decision-making materials.

This would be a common thread running through all the guidelines.
As a matter of fact. However, additional financing would be required here, which would be of considerable importance.

As G-BA chairman, Professor Hecken himself demanded that part of the innovation fund budget should be used for the professional development of S3 guidelines.
That would be a very good decision that I would personally welcome. The AWMF has had a uniform S3 guidelines system for a long time, and a more detailed system for SDM materials could also be created. The methodological toolbox for this would be
available. You then have to decide to make S3 guidelines more patient-centered than before by describing the relevant decision-making situations and developing the necessary materials.

Then we come to the obvious question of why the implementation of guidelines in real healthcare settings can be greatly improved.
The guidelines can become even more practical, i.e. better adapted to the respective practical needs. At the same time, they probably need to become even easier to understand and use.

Short versions have been around for a long time.
Shorter is not alone better. Guideline developers can certainly make adjustments.

Another task of health services research.
Correct. For example, we are currently conducting a survey via the ÄZQ on didactic formats of the guidelines, which we will also present at the congress. With the findings resulting from this survey, we will examine to what extent we can further improve the national care guidelines, although there are already various formats, long, short and patient versions, CME training courses, publications in the German Medical Journal, etc. And yet the delta between guideline knowledge and application is still large.

Does everything have to be even easier?
The goal would be smarter and more usable.

Is the problem perhaps more with the incentives?
Personally, I am a bit skeptical as to whether we really have to “drop the euro” for every further step in practice.
Apparently, as long as we don't have pay for performance in this country.
It would need to be proven whether this is the right mechanism that leads to greater adherence to guidelines. An effective alternative would be to work harder again on the attitude and attitude with which medicine is practiced towards patients.

Isn't this a building block on the way to Pay for Outcome?
In principle yes. When such things are used, one naturally assumes that patient-relevant outcomes will be changed.

But how?
We know from studies that involved patients are happier, decisions are more stable and adherence will increase. There is still a lack of knowledge regarding the question of whether and how clinical outcomes improve. By the way, also with regard to the question of what the whole thing means in terms of health economics.

Does what has just been described appear again in the course of the congress?
We will discuss the topic of person-centeredness as well as other current healthcare science topics for three full days of the conference. We start with the Open Notes project, on the second day the focus is on the national and international status of shared decision making. The technical program is rounded off on the third day by a citizens' forum on the topic of health literacy and the discussion about possibilities for the participation of patients or patient representatives in research projects. In addition, the focus is on highly topical topics such as digitalization in the healthcare system, innovative care models and care in metropolitan areas as well as demand planning. We look forward to exciting lectures and discussions in Berlin.

Prof. Härter, thank you for the interview. <<

The interview was conducted by MVF editor-in-chief Peter Stegmaier, and questions were prepared together with MVF editor Prof. Dr. Reinhold Roski.