>> When Nicholas Copernicus, with his publication of “De revolutionibus orbium coelestinium libri VI” in 1543, placed the sun as the central star at the center of the world and thus replaced the geocentric with the heliocentric system, he not only did away with the outdated idea about the planetary positions . He rejected a complete world view, contradicted the beliefs about the place of the earth and humans in the cosmos and thus also the views of the church. The challenge to the geocentric world view, which had become a doctrine, saw its foundations shaken. Anyone who postulated different ideas ran the risk of being condemned as a heretic. The refusal of church leaders to recognize the new knowledge manifested one thing above all else: the instinct for self-preservation.
Structural self-preservation instinct of organizations
Daniel Defert, sociologist and co-founder of the French aid charity Aides, said of the impending mass layoffs at the organization:
“C'était ma crainte. Je me suis all demandé si, à un moment, il ne fallait pas
Arrêter Aides. En grossissant, en devenant une entreprise avec beaucoup de salariés, les associations de malades perdent souvent leurs objectifs initiaux et après, leur seul objectif est le maintien… de l'emploi.”4
("That was exactly my fear. I've always wondered if 'Aides' would have to end one day. As they grow, becoming a company with many employees, healthcare organizations often lose sight of their original goals, and you The only goal is ... to maintain employment.”)

Niklas Luhmann, also a sociologist, has applied the term autopoiesis to social systems5. This means that systems produce and reproduce themselves in a constant, non-targeted autocatalytic process. They operate in such a way that further operations can follow - the connectivity of the system. This also exists in the mass media social system: “Every broadcast promises another broadcast. It's never about representing the world as it is at the moment."6 Social systems are therefore not open - in direct exchange with the environment - but operationally closed. They cannot change their selective way of perceiving the environment without losing their specific identity.
This system-theoretical approach by Luhmann can provide an explanation for the absurd situation in which the German healthcare system finds itself: it constantly revolves only around itself. At the same time, its actual legitimacy, the well-being of the patient, has become irrelevant. Or, to put it in Defert's words: The healthcare system, which has grown into a gigantic organizational juggernaut, unmanageable for every actor with all its rules, laws and regulations, has lost sight of its original goal or center: the patient.
The patient: From passive patient to involved expert!?
Until the 1960s, the relationship between healthcare professionals, especially doctors, and patients, characterized by paternalism (guardianship) and a large gap in authority, dominated the social picture. The paternalistic doctor alone decided on medical procedures in the patient's interest, without having to take his consent into account.7 The patient, in turn, was expected to have blind trust in the doctor's competence. An equal doctor-patient relationship was unimaginable given the social status and the high class consciousness of doctors that had already emerged in the 19th century. The doctor had the monopoly on knowledge and exclusive decision-making power; the patient had to submit as a passive sick person.
It was only during the democratization debates in the 1970s that the paternalistic model was replaced by a model based on partnership. Over the last four decades, there has been a change in values at all levels of society, away from paternalism and towards individual autonomy. People are also demanding self-determination and opportunities to participate in the health system. And the abundance of diagnostic and therapeutic options, the numerous associated risks and side effects, the close connection with the patient's attitude to life, resources and preferences, make it simply impossible today to make decisions on behalf of the patient in a paternalistic model. what is good and right.
Medical treatment is merely an impact factor on a person's state of health, alongside biological criteria, external living conditions and subjective attitudes. If the patient doesn't cooperate, all medical measures are difficult or even hopeless. The term “compliance,” which was previously used and is still used in some cases, has a certain understanding of the doctor-patient relationship: the patient bears one-sided responsibility for adhering to therapy and for his willingness to follow medical prescriptions and recommendations. In contrast, there is the concept of “adherence” – adherence to the therapy goals set jointly by the patient and medical professionals (doctors, nurses). The adherence principle is based on the knowledge that adherence to therapy is the joint responsibility of the specialist staff and the patient, who should therefore work together on equal terms.
In terms of medical professionals, adherence includes comprehensively informing the patient about the goals of the treatment and the prescribed medication and adapting the therapy to the patient's individual possibilities and needs. Appropriate advice, information and training for the patient are therefore required. Conversely, a lack of adherence means, among other things, that the specialist staff has not succeeded in actively involving the patient and providing understandable information about his illness and the therapeutic measures8.
Numerous studies show that if the patient, as an expert involved, actively takes care of services by participating in the process, this contributes significantly to the success of the treatment. Non-adherence, on the other hand, is a serious problem worldwide. In Germany, the costs of non-adherence for the healthcare system amount to approximately 10 billion euros per year9. Booz & Company and the Bertelsmann Foundation have analyzed the economic damage based on five widespread chronic diseases: Non-adherence leads to productivity losses of between 38 and 75 billion euros annually. Better adherence could probably lead to productivity increases of 10 to 20 billion euros10. However, non-adherence not only causes immense costs, it also has far-reaching consequences for the patient's health. For example, kidney transplant patients with poor adherence have a 7-fold higher risk of transplant loss than adherent patients and 36 % of transplant losses are due to non-adherence.11
From an economic and patient perspective, there is no alternative to the model of the patient being actively involved in the process, i.e. the participation model. Nevertheless, the reality is different.
The reality – paternalism
in a new guise?
In fact, the paternalism that was believed to have been overcome only seems to have been wrapped in a new guise. The doctor still has the monopoly on knowledge and it is largely in his hands what information is made available to the patient. However, the patient's decisions depend on this very information. So how self-determined can they actually be?
Below are some sobering results from various studies: The assessment of shared decision-making is assessed very differently by doctors and patients. 66 % of the doctors surveyed stated that they involve their patients heavily in the treatment process. But only around 36 % of patients see their own ideas taken into account in their doctor's treatment suggestions. 7 out of 10 doctors say they provide the necessary space for patients' questions during their consultation hours. Only half of the patients believe they can ask questions during treatment discussions. Around one to two out of ten doctors refer to external information, other sources of information or written information material.12
While 80 % of doctors support patient self-determination, 46 % fear that participation could be an additional burden. Older people and general practitioners see shared decision making (competent, cooperative and extensive communication) as a burden for the patient. The doctor's communication behavior at the last doctor's visit: The majority of doctors explained everything in an understandable way, but only one in five patients was asked to ask questions.13
Almost 50 % of the population have not yet had any experience with collaborative decision-making. Many patients are not even aware of the decision-making situation in the context of an illness. Around two thirds believe that there are rarely alternative treatments for an illness and believe in the one silver bullet therapy. 50 % with chronic illnesses report that they have never experienced a shared decision making situation.14
The Independent Patient Advice Germany (UPD) found in the “Monitor Patient Advice 2016” that numerous doctors generally deny, restrict, delay or even announce high costs for the right to inspect medical records. The former patient representative and care representative of the federal government, State Secretary Karl-Josef Lauman, said: “With the Patient Rights Act, the right of inspection has been regulated crystal clear. And the doctors have to comply with this without any ifs or buts.”15
Solutions
The studies show that the patient rights that have been enshrined in law since February 2013 have not yet reached everyone's minds. It says here: “Patient rights are understood to mean the rights of citizens who support them in a treatment relationship, for example with a doctor. These include, among other things: the right to inspect the treatment documents, the right to information and explanation, the right to self-determination, which means that a medical measure may only be carried out after consent has been given.
Although patients' self-image has changed in recent decades and numerous new concepts have been developed to define the patient, the "new" and "old" role models still exist in parallel at all levels in the reality of the German healthcare system. In 2017 it was not possible to even include the patient in the microcosm of the care system. How should the demand from Federal Health Minister Gröhe, among others, to put the patient at the center of attention should be implemented?
Some possible solutions
Participatory decision making
The survey results mentioned above make it clear how important changes are in the area of medical conversations and, even more fundamentally, in the understanding of medical roles. Investments could be made here in instruments for the concrete implementation of participatory decision-making in consultation hours, or in concepts for checking and improving medical self-perception. Incentives could also be considered to increase the acceptance of such projects among the medical community. There is still controversy at medical conferences about whether a patient can choose a therapy that is not recommended by the treating doctor.16
The authors of the study “The development of participatory decision-making”17 recommend the institutionalization of tools for participatory decision-making at the various levels of the healthcare system, e.g. B. in the form of an implementation of shared decision making in training, further education and training.

Empowerment concept
The empowerment concept is best known from the World Health Organization's health promotion strategy. The focus here is on enabling people to participate in all social developments: by enabling everyone to have a greater degree of self-determination regarding their living conditions and environment, they are enabled to strengthen their health. Health comes from caring for yourself and others, being able to make your own decisions, having control over your life circumstances and living in a society that creates these conditions. One of the indispensable requirements is information and education. To achieve this, high-quality information must be made easily accessible to large groups of the population. This information offering should be based on the evidence-based “state of the art” of the respective intervention options and should therefore be clinically relevant, up-to-date and factually correct, list the main pros and cons of a therapy, provide information about treatment alternatives, and point out the risks of treatment , easily and inexpensively accessible.

Independent patient representatives
Independent advisory institutions, patient organizations and consumer protection are also an important building block in the concept of responsible citizens. Institutions that provide support with additional information outside of those working in the healthcare sector, such as care facilities and payers, and are available in conflict situations with medical institutions or health insurance companies. There is currently no comprehensive advice and support offering in Germany. And those that exist are mostly based on voluntary work, have little power and no real lobby. In contrast, there are assertive institutions such as expert commissions or arbitration boards of the medical associations. A concept like that in Austria would be desirable here. In seven of the nine federal states there are independent patient representatives to protect patient interests and examine complaints. These patient advocates - which are free when used - are independent, statutory institutions that are not bound by instructions and which protect patients' rights and interests in all areas of the healthcare system. In addition, a health information center was set up in Salzburg in February 2000, which educates and supports patients through independent and comprehensive information.

Open Notes: Transparency in doctor-patient communication
The Open Notes Project18, which was launched to optimize the doctor-patient relationship and patient information, has already proven itself many times over in the USA. Similar to Germany, patients have had the right to free access to their clinical information and medical records since 1996 through the Health Insurance Portability and Accountability Act (HIPPA), but in practice it was difficult to actually access the data. Starting in 2010, doctors were able to give their patients digital access to the documentation of their doctor's visit for the first time through Open Notes. To do this, patients previously registered on a secure patient portal. Open Notes was originally intended as a demonstration and evaluation study. But the first notable results after a year led to the continuation of the model: four out of five of those surveyed had read their entries, two thirds reported potentially clinically relevant benefits, 99 %
wanted to continue the practice after the end of the study. None of the doctors involved in the project decided to end the open notes practice after the end of the study period. Further analysis after a few years revealed a variety of positive experiences: better understanding of health information, improved doctor-patient relationship, better quality of care, better self-care. Patient activation and involvement had improved substantially. In addition, there was optimized adherence and self-management. The Open Notes movement has become established in both primary and outpatient specialist care in the USA.
The patient as the pivotal point
The “health account” model from vitabook is even more consistent than the aforementioned concepts. This is no longer just about patient participation, this is about uncompromising patient-centeredness.
The Health Account is an online application for creating, viewing and maintaining a personal file about every (health) aspect of the user. All of a person's health-related data can be summarized in the account and presented omnipresent, regardless of time and place, to everyone involved in the treatment process as needed. The user can easily – digitally – have all medical data such as doctor’s letters, laboratory reports and X-rays transferred to the account and make it available to others. He has – and this is the fundamental difference to the other concepts – sole control over his account and therefore his data. This means that only the user decides who can save and change which data in their file and who can view and use the information.
Accordingly, the patient's health account is the central hub and collection point for medical data for doctors and patients, geared towards patient self-determination and participation. The health account gives the patient a holistic insight into the treatment process and becomes their own coordinator of their data. At the same time, he can actively participate in the therapy, for example by: B. makes your own contributions (observations, measured values). The vitabook health encyclopedia with evidence-based articles offers you the opportunity to obtain independent information.
vitabook gives its users tools to follow the treatment and critically question it. The health account not only allows, but even demands, active information and cooperation from the patient. This strengthens his role in an unprecedented way and massively and irrevocably changes the doctor-patient relationship by eliminating the asymmetry and counteracting paternalism with a completely new patient self-image. Gone are the days when self-reliant people had to rely on the doctor's goodwill when it came to being able to view their own documents, and only in the doctor's presence. Gone are the days when patients were solely dependent on a doctor's assessment due to a lack of other sources of information.
“It simply cannot be the case that a responsible citizen is reduced to a patronized subject as soon as he crosses the threshold into the clinic or practice,” says vitabook founder Markus Bönig. The patient-centricity is manifested in each of the numerous functions of the health account: in the solutions, for example, to carry out many unnecessarily time-wasting administrative processes quickly and easily online (arranging doctor's appointments, requesting follow-up prescriptions, submitting invoices to the PKV and the financial aid office).
While service providers are still discussing the possible design and storage locations of the electronic health record, almost 200,000 users are already taking their health into their own hands with the vitabook account, thus driving the service providers ahead of them technologically. Hardly any doctor will find sensible arguments to evade their patients' right to service and use their accounts. The normative power of fact is known to grow rapidly, especially in internet-based systems. In short: the hesitant implementation of patients' rights is currently being overtaken by reality.
“Utopias are often just
premature truths"
If the microcosm of the health system is to revolve around the patient as the central star in the future, there is still one question that needs to be answered: What would the ideal care system look like from the patient's perspective? Based on the results of the study “Patient expectations of structural and process quality in outpatient medical care”19, here is an ideal typical visit to the doctor. (The spectrum of quality dimensions from the patient's perspective is independent of the care structure. Analogous expectations are also formulated for other care settings.)
As soon as the appointment is made, it becomes clear: I am not one of numerous other petitioners who have to wait resignedly to be somehow “shoved in between”, but rather an equal human being whose time is just as valuable as that of the medical staff: no endless telephone loop, quick appointment. I enter the practice and know: this is about me. The atmosphere is friendly, bright, clean, with loving details. A polite, non-condescending lady asks me to take a seat in the waiting room for a moment. The same picture there: beautiful interior, interesting magazines, a water dispenser, comfortable chairs. I can't finish reading an article, I'm called up after five minutes.
A nice doctor greets me at eye level. He doesn't seem rushed, but honest, patient and empathetic. He encourages me to calmly talk about my concerns and listens carefully. I have the feeling that I am perceived and taken seriously as a person instead of a number; I feel comfortable. I am never interrupted by him or phone calls. I quickly notice that the doctor recognizes me as an expert in my own health and wants to work with me to find a solution. Psychological and social components in my life are also included.
The doctor proceeds very carefully and takes into account all possible causes. He knows the entire therapeutic spectrum and is also open to natural healing methods. He only prescribes really necessary, good and inexpensive medications with few side effects. The treatment is individually tailored to me and appropriate; no more is done than necessary, and certainly no double examinations.
The doctor is realistic in his self-assessment. He knows his limits, refers people to a specialist in a timely manner and also works with other doctors. He can admit when he has made a mistake.
During the consultation, the doctor gives me understandable information about the disease, its causes and progression, about the medication and its side effects. He also refers to external sources and informs me about self-help groups. He explains to me what I can contribute and recommends, for example: B. Patient training.
A utopian scenario? The French writer and politician Alphonse der Lamartine (1790 – 1869) responded: “Utopias are often only premature truths.”
from:
Markus Bönig, Managing Director of vitabook