Digital space for health: enter at your own risk!
“A system is not the sum of the behavior of its parts it’s a product of their interactions.”
Russell Ackoff
In the digital era, outdated, financially administrative infrastructure undermines the doctor-client relationship and effective care delivery. People’s data are increasingly being digitized, but its management is done by institutions, not by individuals themselves. This means that people themselves do not have control over their own (medical) data and interaction between doctor, institution and client is supported only to a limited extent. Current innovations and the management of the explosively growing information from various domains require reliable data, and more attention is needed for that. The current digital set-up, which does not place the doctor-client relationship at the center, prevents sustainable cross-sector use of data. Increasing societal challenges such as ageing, staff shortages and climate change reinforce the urgency to address this problem.
It is therefore time for a fundamental revision of our digital healthcare infrastructure. A digital space that takes the professional value of the doctor with the client as the starting point and facilitates cross-sector collaboration can — as Ackoff suggests — lead to a more human-centered approach to healthcare and to unprecedented breakthroughs for global health in the digital era.
Such a digital space can therefore be defined as a virtual environment that can potentially connect people and technologies without limitation in order to create, build, use knowledge and carry out numerous digital activities. It covers both the space for technology and that for data.
Passive digitization without fundamental adjustments
The healthcare landscape has undergone passive digitization worldwide, in which existing processes have been “digitized” without fundamental adjustments. In clinical practice, documentation systems are used that were originally designed for administrative-financial tasks. Health information is distributed between different systems, making it difficult for both doctors and clients to oversee where specific information is located. In practice, this can mean that a client with a chronic condition has to explain their medical history again at every hospital visit.
Despite various good initiatives, the current digital space leads to unnecessary administrative burdens for doctors, sometimes duplicate examinations are carried out and this can even be harmful to health because information is not (timely) available.
Fragmented knowledge and lack of overall insight
Despite all technological progress in recent decades, more than eighty percent of health-determining data is still missing in clinical practice. While client and society do expect doctors to stand for reliable health advice and treatments. Nor do our own health-determining data appear to be easily available to gain more control over health. Table 1 shows an overview of various domains and the related health-determining data and how certain factors influence them.
Meanwhile, there is a proliferation of apps, portals, and other technological gadgets on the market, however their development often takes place separately from clinical practice. In the best case, this technology therefore delivers limited added value and sometimes even (serious) risk for health. The increase of AI models with effect on health will put even more pressure on the deployment of shared expertise of doctor and client. In order to be able to steer this, health-determining data will first have to come under shared management. In addition, healthcare is increasingly superspecializing, whereby domains are often studied separately and knowledge remains fragmented. As a result, a client wonders more than once who still has an overview of his or her health and data remain relatively limited in terms of interpretation and thus value. This same paradoxical effect can be observed with medical guidelines: keeping up is increasingly a challenge, as a result of which the vast majority still remains insufficiently substantiated. Although technology therefore provides access to a lot of information, this does not automatically also mean being well informed.
Lack of an integrated digital health picture
A complete digital health picture, based on all available health-related data, can drastically change care. Through a smart combination of real-time data, continuous insight into health arises. This facilitates the transition from incidental care to continuous monitoring and ultimately to predictive and prescriptive analysis. As a result, doctor and client can make better informed decisions. Despite the available technology, the current fragmented digital environment hinders an effective implementation of this concept.
Lack of control over health data
The current digital space shows serious shortcomings, with the main problem being the lack of control over health data by doctors and clients. This undermines trust and hinders the professional functioning of doctors.
Digital security requires that healthcare institutions take all necessary measures to comply with current standards, without hindering innovation and development through limited data availability. Doctors encounter significant obstacles in both clinical work and innovation, often with the incorrect explanation that “it would not be allowed because of the GDPR”. This creates an undesirable situation that harms professionalism. After all, it is not the GDPR that prohibits sharing data; this law actually provides guidelines for how data availability can take place safely.
Given the European developments, it is important to act from shared values such as human rights, privacy and transparency in the design of the ICT structure. This means — especially now that the European Health Data Space is being set up — that the citizen (together with his or her trusted doctor) comes into and remains in control over data that is about him or her.
Digital space is designed dangerously
The current digital space in healthcare is not only unattractive, but also risky for care and health. A well-designed digital environment can increase doctors’ job satisfaction, improve their performance and promote their sustainable employability. For clients it can lead to better control over their health and improved outcomes due to reduced stress. It is crucial to present health information with the right emotional context, which promotes the “checking in” of clients and the tuning in of doctors. This is essential for effective health collaboration. Research shows that chronic stress or negative experiences can negatively affect health, the “nocebo effect”. A poor user experience can result in less personal doctor-client contact, overlooking essential information and incomplete medical record formation.
A user-friendly digital environment that offers the client more insight during the treatment trajectory in, for example, tailor-made and explained imaging not only creates calm, but also enables the person involved to take control in time over relevant matters. By making smart use of AI technology, such as speech recognition for making notes, doctors can better concentrate on the client during consultations, which strengthens the doctor-client relationship and improves the quality of care.
Professionalism under pressure, digital space not designed for it
The increasing digitization in healthcare puts compliance with the Hippocratic Oath under pressure. This fundamental professional value of the doctor should be given a new interpretation in the current context (see figure 1).
Confidentiality and the promotion of health are jeopardized by a digital space that is not designed with ethical principles as a guideline. This tension between modern technology and traditional medical ethics calls for a careful reconsideration of the design of the digital space.
Impact of the current digital space on the doctor-client relationship
The digitization process in recent decades has mainly focused on the institutions and partnerships in which care is offered. In doing so, a crucial step has been skipped: the doctor-client relationship that rests on mutual trust. Communication between doctor and client over time should be ensured as a common thread: open to each other, confidential to the outside world and shared on the basis of dynamic mutual consent. Unfortunately, that is not the case and the foundation for the digital space for health is therefore missing, with the following risks.
Breach of trust
The crucial bond of trust between doctor and client threatens to be undermined, which leads to worse outcomes for the health of the client. For example, reduced job satisfaction is experienced due to an increase in administration because of excessive emphasis on accountability for the doctor. In addition, the relationship threatens to become more business-like in character, in which mutual expectations do not automatically remain aligned.
Limitation of autonomy
There is reduced control by doctor and client over health data, risks due to the development of all kinds of services and products without input from healthcare professionals and their clients. Reliable data are necessary for these services and products and for the correct interpretation of data, continuous expertise and experience are required (“data curation”).
Increasing technological dependency
Doctors have limited influence on technology development, which results in delayed innovation and high dropout of new services and products (valleys of death). The first valley of death arises when a prototype or concept needs additional funding but investors are reluctant due to the high risks and long time horizon. This means that developments that are crucial for societal health in the longer term have a high risk of being left out.
The second valley of death occurs when scaling up to broad market acceptance, in which the product does not sufficiently match the market. Development and steering of technology outside the expertise and attention of the doctor in the consumer market thereby becomes a more attractive route, possibly driven by interests that conflict with the professional values of the doctor and thus potentially negative consequences for the health of society. For innovative strong concepts and products, on the other hand, it is almost impossible to acquire a position in the market, which threatens to make the “big player” even stronger and further drive the vicious circle of vendor lock-in. This dependency on technology not only carries the risk of a lack of innovation, but even a threat to health(care).
These developments form a threat to the professional freedom of doctors and the self-determination of clients, with potentially serious consequences for the quality of healthcare.
Urgency: address fundamental shortcomings now!
In the coming years we face increasingly complex health issues due to ageing, staff shortages, migration-related housing problems and climate change. There is an urgent need for a digital space in which doctors and clients can work on health safely and freely while simultaneously innovating with all relevant stakeholders in the ecosystem.
MCT model as a blueprint
To make the digital space for health safe, the design must take into account the following elements — which are closely related to each other — (see figure 2, the MCT model):
The MCT Model shows a fundamental system approach for a sustainable learning global digital space for health, in which three essential components — Mindset, Collaboration and Technology — are in continuous interaction with each other. As a result, innovation, research, development of products and services are not only implemented, but sustainably anchored in the cyber-physical health system.
Mindset
■ Openness and transparency: everyone contributes from their own expertise and experience.
■ Cross-sector collaboration based on shared values, with the Hippocratic Oath as a guideline.
■ Continuous learning: flexibility and innovation are central, with a focus on valuable improvements.
■ Sustainable handling of data: data as a source for health improvement, managed from the doctor-client relationship.
Collaboration
■ Trust relationships: the doctor-client relationship as the foundation for broader collaboration and thus also the management of technology and data.
■ Bundling expertise: multisector deployment of knowledge and experience for health improvement.
Technology
■ Supportive: in line with shared values and the Hippocratic Oath.
■ Innovative: continuously developed and improved, with the possibility of modular adjustment.
■ Data curation, management and availability: enables digital, specific and reversible control over health-related data by doctors and clients from the design.
This approach safeguards a dynamic, safe and effective digital health environment.
Human interaction as the basis for digital innovation
To address fundamental shortcomings in the digital space, it is essential to approach them from the perspective of how people ideally interact with each other in the physical world. The current digital space seems to completely reverse this natural interaction. We seem to have become accustomed to a digital world that approaches us in an unnatural way. It is therefore crucial to build from personal trust relationships between people, starting from the doctor and client. On this basis, an organic, cross-sector collaboration can then be developed, which acts as a connecting force and grows seamlessly into this foundation.
Trust as the cornerstone of healthcare
Trust forms the basis of every relationship, also in healthcare. Increasing trust strengthens the professional relationship; when it decreases, the bond is under pressure. In the latter case, if no recovery is possible, the relationship can and should (ideally) be ended, for the safety of both persons. In modern healthcare, technology can play a crucial role in strengthening this bond of trust and the networks that form around it.
Technical requirements for the doctor-client relationship
Technology offers unprecedented possibilities to optimize the match between doctor and client. This is of inestimable value, since doctors spend a significant part of their time building — and unfortunately also restoring — trust. This as a result of, for example, unrealistic expectations of the client, negative experiences from the past or increasing workload in healthcare.
By deploying advanced technology, doctor and client can objectively monitor their relationship in terms of quality and strength. Consider deploying AI applications that can map the mutual expectations, emotions and experiences of doctor and client in physical and digital contacts with each other. This offers the possibility to detect potential problems at an early stage, apply targeted interventions to strengthen the relationship and better align care with individual needs with the aim of improving health on the basis of a network that collaborates from trust and on the basis of expertise and experience. The narrative that can be captured from this can function as a digital twin, which is further fed with the most reliable health-determining data interpreted in context.
Availability of data from the European Health Data Space therefore also depends on fundamental ICT architecture that meets principles derived from these core value(s). Crucial in this development are, for example, technical applications for reversible consent by the citizen and by his or her trusted doctor on data. From the relationship between doctor and client, after all, a natural bond of trust can be organized on the availability of data, and thus also the deployment that they both determine.
Organizing from the “why” of healthcare: Hippocratic Oath
Excellence in organizations requires a balanced development of technological capabilities and value-driven approach. A one-sided focus on digitization or values falls short for sustainable care innovation (see figure 3, Value Model).
Smart humanity: unraveling complex health mechanisms
By structuring organizations around professional values in the health ecosystem, integral insight arises from individual, both at a personal level and ecosystem-related data, which at an aggregated level determines health. This makes it possible to define and understand health as a concept better. Although complex, knowledge about health principles comes within reach. By deploying technology from an individual and ecosystem perspective, we can unravel complex mechanisms with advanced computing power — the essence of Smart Humanity.
Key points
■ The current digital space for health is outdated and not effective. It is mainly focused on administrative and financial tasks and the organization, while at the personal level between doctor and client health is determined and studied.
■ There is no good control over health data, whereby more than eighty percent of the health-determining data lies outside clinical practice. This leads to fragmented knowledge and a lack of overall insight for both doctors and clients, and ultimately society.
■ There is an urgent need for a new digital space for health that places the professional value of the doctor and relationship with the client at the center.
■ This new digital space for health must promote cross-sector collaboration, be based on mutual trust, be built organically from one-to-one in a flexible network and transparency, and make innovation possible without endangering health.
Although this contribution often discusses the doctor-client relationship, the principles and insights also apply to the relationship between other healthcare professionals and their clients.
