Her talk was certainly not an attack on all the good technology already out there. She mentioned several examples of technological developments in her own field (radiotherapy) to enable increasingly targeted radiation. Speijer: “These developments are coming at us like a tsunami, overtaking each other left and right. The number of apps you can install and uninstall on your smartphone is enormous. But technology that supports the patient and his/her supporters and professionals throughout the healthcare chain in interpreting and communicating about the patients’ health situation is lacking. As is the use of his/her data for this purpose,” said the inspired CatalyzIT entrepreneur.

No issue

During her highly interactive presentation, Speijer made a warm plea for the abolition of repeatedly asking patients for permission to use their data.  Speijer: ‘In a relationship of trust, the basis of cooperation and contact between patient and doctor, this is not an issue. There must be 100% certainty that those involved (designated by the treating physician and patient together) use the data primarily for profit of the patient’s health.’

Digital support

‘Anno 2023, a general practitioner will still receive (physical) letters after completing treatments. In the most ideal situation, patients will find these in their patient portal. And often the treating physician must also request information from other specialties to get a complete picture.

A different digital form of communication, for example via a “chat room” in which data is directly turned into added value, can offer a solution here. This is an approachable and simple way of communicating, facilitated by technology, that can not only enhance communication between patients and their teams, but also enable healthcare professionals to use their expertise in the best possible way. Thus, connective digital communication can be the ultimate complement to the physical consultation. The digital encounters or alignments with all relevant parties at the right time also reduce the number of checkups and protocol encounters, thus relieving both the patient and the healthcare professional.

Complete picture

It is essential that all relevant parties: the patient and the team around the patient, are involved and can interpret and share information and expertise with each other, so that a shared and complete view of the health situation emerges. In addition to sharing a new finding, result or treatment step, it is also possible (and especially logical) to inquire how the patient is doing and if there are any questions. This is hugely important, as I experience in my practice that the sooner a patient has a grip on their health situation and feels supported by their practitioners, the better the health outcome.

Strengthen

CatalyzIT is currently working with several parties on connective technology. The healthcare company also lectures and provides training in various areas from technology to mindset, all aimed at strengthening the connection between doctor and patient. If you are interested, please contact us.

Cybercriminals in charge

Back then, it was about controlling outbreaks of infectious diseases caused by water pollution; today, it is about safely managing (access to) sensitive information. As a board member of a healthcare institution, you run the risk of having to do “business” with cybercriminals when you are forced to buy back “kidnapped” sensitive information. Think of the incident at Maastricht University two years ago. Legal liability and prosecution as directors for negligence, let alone the total costs involved and the damage caused by a suspended operation, is another current issue. And keep in mind, in healthcare, this is about life or death, or at least recovery or complication. Additionally, there is also secondary damage, such as corrupted information that can lead to serious medical errors; stolen information that can be sold for blackmail; phishing, buying prescription medication to file false insurance claims, and so on. A recent example of this is the WannaCry ransomware attack in the United Kingdom, which was estimated to cost more than $100 million, on top of the disruptive effect on healthcare.

Do no harm

And to think that something like this can happen because one employee clicked on that link in that phishing email a few years ago, or because one poorly protected website, server, or database under your management. Not to mention the medical devices and all the peripheral equipment that can provide notoriously insecure places in the ecosystem. Because outdated software that no longer receives updates is a fantastic target. Especially with a significant growth in technological support, this requires our continuous attention. For those who would like to seek restriction and control, the bad news is that this is no longer sustainable because guaranteeing safety and care according to today’s standards means continuously integrating state-of-the-art technology. Furthermore, an increasing number of devices (such as wearables), regardless of how useful they are, will be connected to the web as an IoT and will require management to ensure continuous security.

Technology is also a solution

Now, one could lose heart, especially in the light of the necessary cost savings in healthcare, but the same technology also provides us with the solution! An enormous time-waster and irritation for healthcare professionals is the extreme amount of administrative obstacles and proliferation of certification in healthcare in general. Just as setting up and performing periodic checks and measurements, for example. This causes healthcare professionals to lag behind. Technology will increasingly offer the possibility to transparently show real-time performance without time-consuming hindsight reporting and reporting.

Mindshift

To fully utilize technology in the workplace, it is crucial that our mindset shifts from accountability to openness to new possibilities. Working together, supported by technology, should become the standard. As technical processes are increasingly facilitated, we as healthcare professionals can take on the role that suits our expertise and experience. This way, you also have an immediate overview of which technology components and services support your healthcare and their 24/7 performance. And of the data of…

New technology: Driven by Human Values

Patients and healthcare professionals need to take the lead in technology as digital innovation starts to interfere with human values and needs. It is crucial that they organize together and not leave crucial decisions to other stakeholders, such as the tech industry or governments. All of these stakeholders should adhere to the same values, namely to contribute to health and care, in particular the Hippocratic Oath. It is getting harder to follow the Hippocratic Oath in the absence of orchestration principles to place human values at the center of information technology and communications (“IT&C”) design globally.

The hippocratic oath

The deepest professional value for a doctor is the Hippocratic Oath.2 In short, it comes down to the promise to entrust the patient and society to the best care and health in confidentiality. Given the technological developments and possibilities in contemporary society, the Hippocratic Oath could look like this:

As a Data Driven Doctor, I will:

• Make health information valuable
• Make health information available for my patient and the knowledge network of colleagues.
• Treat health information confidentially
• Define and Lead Technology & its development

Aiming at the best care and health for my patient and society.

Contemporary challenges in healthcare

In clinical practice globally, the shift from paper was done quite literally: patient records, processes, and workflows suitable for the traditional organizational structures were simply digitized. In retrospect, rethinking the organizational structure in terms of what technology and its advances could offer us as a community seemed not to be a priority. Since technology influences processes, interactions and behavior, it can also freeze them with farreaching consequences. Problem solving in the day-today treadmill of existence instead of back casting and imagining what we really want technology and its expected development to bring us in future has a high cost. As a matter of fact, we have lost sight of the translation of our societal values (including the Hippocratic Oath) into principles for IT&C design. This fundamental aspect of IT&C design is still lacking today, leading to significant challenges in healthcare.

A. Digitiz-ed: Increasing Risk for Health Safety

1. Digitized Paper

In clinical practice it takes the healthcare professional a lot of administrative time and effort to get insight into the health situation of their patient, as clinical information is stored in legacy documentation systems in files, folders, subfolders containing letters, PDFs, notes, workflows, to-do lists, etc. Moreover, the average professional must go through various documentation systems in different clinical practices, hospitals, or other care organizations to gather all the necessary information. To maintain an overview, all of these documents are copied manually into the systema of each healthcare professional and organization. This is an unnecessary, error-prone process leading to potential harms to patient safety, the reliability of healthcare professionals, and energy inefficiency, as well as the need to put in place protection and governance measures to maintain robust resilience concerning cybersecurity.

2. Digitized Bricks and Mortar

A complete timeline of all records including the essential metadata (e.g. information about the place, the type of diagnostic or treatment machine or tool, the responsible care team members) of a patient’s health path is not recorded since when digitizing some decades ago the ‘old organization’ was simple enough. With growing mobility, patients are visiting more and more clinical practices and with big advances in healthcare like expanding diagnostic applications, treatment modalities and superspecialization of healthcare professionals, the complexity of healthcare has increased a lot. The need for a complete timeline of all records will rise further with demand for telehealthcare. Strangely enough, it seems there is a widely held belief ‘the healthcare system’ is taking care of this complete timeline, while in reality there is no governance over this process. As a result, healthcare professionals struggle daily to get the right information on a timely basis. Also, information is difficult to track or may even be hidden away, despite best efforts.

3. Digitized Consent Concerning Access to Information

Considering the approach of how consent on access to information has been managed it simply became a etranslation from paper in recent times. As the world wide web facilitated the spread of information to anyone anywhere, it became a business model for companies. Besides the primary model based on development of services; advertising is still a big part of the revenue. In the meantime, privacy legislations like “HIPAA” (Health Insurance Portability and Accountability Act), “CCPA” (California Consumer Privacy Act), “GDPR” (General Data Protection Regulation) and “PIPL” (Personal Information Protection Law)8 have been introduced in the U.S., Europe, and China.

As a result, in the consumer market, we see “EULA” (End User License Agreements) of unreasonable sizes and understandability. Applying this to the field of healthcare one might discuss whether ethical to make people sign such agreements in a vulnerable (mental) state. In the healthcare sector we see a twofold reaction. Ignorance of the potential consequences of the importance of personal data protection especially for our professional relationship with the patient. On the other side of the spectrum, we see a reluctance giving access to data when crucial for continuity or advancement of care.

Lacking a seamless integration of consent concerning access to data, all sorts of data breaches that can currently be identified: from failure to deliver (on time), loss, unauthorized inspection, to use or misuse for purposes other than primarily providing care without consent, including technology, pharma or market research companies getting access to these sensitive data. Services, drugs, or marketing tools, with or without consent can now be developed in return for services or payment to the healthcare organization or healthcare professional. For Data Protection Authorities (“DPAs”) like the Dutch AP — the independent public authorities applying the GDPR — it is practically impossible to oversee the fundamental right to the protection of personal data. In conclusion, the GDPR is not currently construed according to its intent, which leads to an increasing risk for health safety.

B. No State-of-the-art Technology: No Insight into Overall Health Situation

In healthcare, mainly financial administrative processes are supported digitally, much less the patient characteristics, which determine healthcare professionals’ actions and outcomes with their patients. Purchasing of technology in clinical setting is often done after long-term trajectories of (public) procurement processes. These involve risks and uncertainties for suppliers of whom a limited number can survive and finally sign long-term contracts with hospital management, receiving a privileged status. As regulatory requirements become more intense, such as ”MDR“ (Medical Device Regulation), CE / FDA certification, and the EU AI Act, they tend to slow down innovation even further when applied within these existing and cumbersome organizations. “

Since fundamental decisions on the functionality of the technology already have been made in the very beginning of its development, the people who deliver and receive care through it will face the resulting limitations and their clinical consequences. Even with deep knowledge in the field of medical informatics it turns out to be very hard to see through beautiful promises, let alone to foresee the implications of what has been offered and its clinical consequences over time as insight in the deeper layers is lacking before signing agreements.

For example, an EHR vendor can claim integrated international standards for semantic interoperability like SNOMED International. Taking a deeper look this can turn out to be a low-value implementation of a limited list of codes for diagnoses and some treatments while eliminating the rich hierarchical structures representing its added value. On the other hand, this co-creative process with continuous input from the clinical side, discussion on what’s possible and appropriate from a technical standpoint is crucial to support care safely over time. Standards, certifications, and other regulations are extremely important to deliver safe care, but they can’t live up to clinical guidance and continuous validation! As technology in the consumer market is developing exponentially, the domain of health and leisure applications is growing alongside it. While delivering care with legacy technology in the clinical setting as it shapes up to increasing regulations, these applications are mainly developed outside clinical practices. This means healthcare professionals generally lack information on most of their patients’ health characteristics. Consultations still take a central role in healthcare today because it is impossible to harness the power of technology considering all variables like exposome, social graph, genome, microbiome, transcriptome, and metabolome. In short, we are unable to create a continuous insight into the overall health situation of a patient.

Even more concerning is the emergence of a parallel landscape able to expand driven by advertising and profit, and not necessarily following the core value of the Hippocratic Oath or other values like inclusion, justice, equality, solidarity, non-discrimination, or democracy. This holds a potential risk of harm to entire populations. For example, social media platforms can say that they support people with mental problems but may make profit on insights shared by their users. Seriously ill and vulnerable people may miss out on routine care, making them tempting prey for sinister treatments outside the scope of regular licensed and heavily regulated practices. This is a paradoxical situation.

C. No Support from Connective Technology: No Learning Health System

Making information available is not digitally supported in the current systems, either among colleagues from the same discipline or across medical disciplines, let alone at the institutional level. Consequently, healthcare professionals are using workarounds to get the information to the right place on time. This is done by phone calls, additional meetings, emails, direct messaging etc. To keep oversight in clinical settings, correspondence is still used (like when working on paper) and archived in all these systems. This leads to unnecessary risks for patient safety, and creates extra administrative work for the physician who would rather spend time with the patient. Moreover, the ability to learn from data is lacking because information can become blocked in certain systems.

D. No Proper Archiving: No Value Creation and Undesired Bias

Every organization and clinical practice have its own processes in place to store patient health information (irrespective of its value) for a period subject to statutory data retention periods until simply deleting it. Data curation, the process in the clinical setting where communication, clinical evaluation, and decision-making take place, determines the value of data. This includes data for its primary use (i.e. its clinical purpose) and for its secondary use (scientific research, the development of services, or pharma, quality, financial or safety analysis). Efforts made separately from clinical processes, like data cleaning, checks by clinicians on non-current data in individual platforms, and systems or standard data entry forms and boxes for clinicians and patients, can lead to the following issues. First, loss of context over time leads to lower data quality. Second, standardization of data entry forms can lead to selection for information already known, therefore enlarging potential biases in clinical decision making, research, service-, product development and missing potential crucial factors to improve quality, finance, safety, security, energy efficiency, and much more.

E. No Joint Focus on (Cyber)security: Potential Profound Implications for Societal Health

The cybercriminal also seemed to plunge into healthcare recently. Healthcare had the highest number of data breaches of all sectors in 2020. Based on the 2021 Identity Breach Report, the healthcare sector experienced a 51 percent increase in the total volume of records exposed when compared with 2019.15 Healthcare is threatened by the cybercriminal who operates in a purely financially driven way. The most important areas appeared to be ransomware and disinformation in the era of digital everything, which puts healthcare at great risk. Joint efforts throughout the entire sector to protect from this (new) type of global health threat has never been more urgent. A crucial step in this is collaboration among healthcare professionals making it part of their work ethic.

Solution to sustainable health ecosystem: A new roadmap

As described above, big challenges are threatening safe and sustainable health(care) globally while tackling problems in the workspace by fitting in technology seems to even get us further away from what health(care) should and could be. In the early days of the world wide web there was a shared vision of a huge potential to connect everyone’s computer anywhere in the world, a democratic model to build up knowledge globally. In the following years, it escaped the attention of the broader public what digital development would imply when you leave it to some parties. From the start of the world wide web (Web 1.0), platforms (Web 2.0) developed. Web 2.0 brought so many conveniences (either for free or in exchange for a subscription fee) that we as a society got used to. We seem not to make a big deal out of the way data should be handled. Data about ourselves, our activities and what we consider as valuable to keep regardless the range of technological applications over time. During the COVID-19 pandemic, we have seen healthcare professionals working longer hours, risking their own health to help patients, while in society there has been a growing trend towards healthcare consumerism and lack of trust. Insight into the expectations and experiences of society and healthcare professionals toward and with each other will be required in order to bridge this gap in the near future.

A. Mindset

Globally, there is a growing awareness of the fact that technological development has such a societal impact.17 Recently, the European Parliament discussed defending European values, democracy, and fundamental rights in terms of how the Digital Services Act could set the global benchmark for regulating online platforms in the future.18 19 European frameworks and legislation are important, and the GDPR provides crucial rights supporting confidentiality in the doctor-patient relationship.

However, a broader sense and understanding of what is necessary and urgent to find a fundamental solution is ahead of us now. While releasing more legislation and regulation it is key to acknowledge there is a window of opportunity now as technology for Web 3.0 is reaching readiness levels allowing us to collectively translate our human values into the design principles for IT&C. This will facilitate the process to keep up with the speed of technological developments and to create frameworks and laws around. In healthcare we must be aware of this crossroads in history as our health is at stake globally now.

Sustainable care is about orchestration of people, processes, and technology. The essence is to be able to provide the best care in confidentiality. This implies the freedom for patients and healthcare professionals to match with each other flexibly, supported with the available insights in order to build upon that trusted connection by knowing about their expectations and experiences with each other. It also means the ability to stack knowledge and insights openly and transparently.

This requires a shift in focus from return on investment to return on data aiming at return on health. A learning health system where we can learn from every single patient starts with the mindset of being aware of the societal value of data and the underlying value of the Hippocratic Oath when contributing to the health and care space.

B. Cooperation with Mission

By applying Ostrom’s principles for self-governance of communities, and common property, data can gain their genuine value when curated within communities with a shared goal (Commons Based Peer Production) or more solid mission driven communities sharing a long-term purpose (data-driven health lab co-operative)26 demonstrating that approach equating data to oil is a false, deceptive assumption. 27 If data would be treated as oil, it becomes a rival product in a highly profitable and under-regulated data economy, without equal health and fair wealth distribution. It won’t automatically match the shared values of our society and specifically the Hippocratic Oath. Similarly to the provisions we have made socially for pure drinking water for all, we will have to orchestrate analogous to how our society takes control when it comes to data and technology in the current technological revolution.

Therefore, a more appropriate definition in healthcare might see data equivalent to blood.29 This would be proper from a moral perspective. However, from a value perspective the definition is incorrect. Because like oil, blood is a finite resource, whereas data are characteristic for their anti-rivalrous property, which means opposed to non-rival goods that are not reduced in case of consumption, data even increase. For example, with the same high quality, context-, device and expert-traceable curated dataset a range of diagnoses can be made. For example, with a combination of this and other curated datasets development of drugs or applications like computational models can be done, while a selected dataset can be used to control quality, finance, and process flow. Most valuable data are curated within a cooperative that’s driven by a shared long-term mission co-creating and representing stakeholders from the different communities with the right to these data: the citizens (or patients) as consent holders, the healthcare professionals and researchers as knowledge contributors, the technology developers as technology orchestrators and the data curators (or Rentmeesters).

C. IT&C Principles Empower Right Mindset

Speijer & Walgemoed are concretizing these principles toward a sustainable health ecosystem. All principles are needed to design its foundation.

1. Data Rentmeesterschap

The requirement for data curation by design in the orchestration of IT&C is first described as data Rentmeesterschap. 30 This encompasses taking care of data, maintaining, and making it accessible to the stakeholders and future generations on behalf of (healthcare) professionals, researchers and citizen including patients.

The first step starts at the moment of data creation: the consultation or knowledge contribution of the healthcare professional and context of the patient. To provide qualitative data, this needs to be open and therefore highly confidential. This cyber-physical moment of interaction determines the quality of data. In order to turn these data into valuable data it needs to be done in agreement with top performing colleagues in the specific domains of expertise; seamlessly and instantly. The second step encompasses archiving data for now and later, as an asset on behalf of the team of the healthcare professional and patient with consent of both. This process is highly confidential between the healthcare professional and patient, with them deciding on the level of transparency for primary and secondary use together.

This is the foundation for a learning health system: the patient with healthcare professional (data driven doctor) as trusted link, both committed to lead with their right to data for health of the individual patient and benefit of society, supported by their trust expert network. Data curation as described above forms the prerequisite for quality, reliability, provenance, and integrity of data. This process is determining the safety and outcome of care, research, and drug and technology development.

2. Dynamic Informed Consent

Dynamic informed consent is an understandable form that describes what happens to the consent holder’s data, its connected technology processors and knowledge contributors using that combination.

3. Data Application Independence and Freedom of Applications

Applications process data. Data is made available independent from the application. In this way data can move freely across applications and can be curated sustainable. Applications now by design can be exchanged by new and better applications, this drives innovation.

4. Timeline

Recording of all curated data with their metadata and relations over time provide the context. Because knowledge is added during a specific period in time, time traveling shows what happened when and with new developed insights. One can go back in time to see whether these could give you new insights. It now becomes possible to forecast different scenarios. In addition, artificial intelligence can then drive the support on a bigger level. This forms the technical foundation for the learning health system.

5. Translation Engine with Underlying Living Standards

By connecting the knowledge contributors seamlessly and flexibly, international standards for semantic interoperability like SNOMED, RadLex, NANDA or LOINC supra mentioned can be integrated as underlying living standards facilitating them to curate data increasingly faster and better.

6. Self-Sovereign Identity (“SSI”) with Verifiable Credentials

For seamless, flexible, and trusted connectivity between the patient and healthcare professional in the virtual space credentialing – showing provenance of the data- is required. Technology based on blockchain can help when interacting digitally in a secure and privacy by design way.

7. Personalized User Experience (“UX”)

And since, all applications are processors (they don’t keep or control data), the former ‘one-size fits all’ UX for every single application is now exchanged for a truly per-sonalized virtual space for all processors optimizing over time.

8. Virtual Space

In this virtual environment stepping in and out is easy with freedom of choice as a prerequisite from both sides: the patient and the healthcare professional. Both aiming at the highest level of connectivity and trust. And therefore, health outcomes. Getting insight in the expectations and experiences with each other facilitates this process. Having access to, developing, and selecting the latest and best applications and algorithms. With the ability to specify, improve and kill applications when (potentially) dangerous for safe care delivery or compromising health.

Sustainable Health Ecosystem Globally

A prerequisite to develop the sustainable health ecosystem is healthcare professionals together with citizens taking the lead in technology as digital starts with human values and human needs. In this health ecosystem anti-trust law and legislation is embedded in its design. This is also the case for the shared human values and in particular the Hippocratic Oath as a professional value.

“Cooperatives with a shared long-term mission yielding curated data will be able to concretize the vision of Ostrom: revealing the anti-rival nature of data and their value for the entire society, instead of being financially beneficial for a small group and mainly being underexploited.”

Bringing in the maximum potential of everyone’s qualities and insights, continuously. Performing on top of licenses, realizing breakthroughs. For many more people and our future generations to learn and create wisdom on it, exponentially.

Diagnosis and treatment plan

The congress, organized by the Federation of Medical Specialists and the VIPP and Registration at the Source programs, consists of two parts. The first part, the diagnosis, is a tour of different developments that together determine today’s digital Umfeld: visibility and insight into the digitization of information (flows) and processes in healthcare. The second part, the treatment plan, offers a perspective for action. Also to take colleagues who are not on the front lines along in the movement that is underway.

Now that almost all hospitals have set up an electronic patient record (EPR), the path is wide open for sharing information with each other. You would think. But it’s not that far yet. Because standardization of what you record is needed for that. And standardization has been a kind of taboo for a long time, says Vincent Buitendijk, managing director of the NVZ. ‘We all want to do it our own way.’ Meanwhile, people are starting to become convinced of the necessity to clearly record for multiple use of information. Now the step to ‘do’.

First get the basics in order

The Registreren aan de bron and VIPP programs, among others, accelerate the hospitals. The first by, among other things, steering towards national agreements on, for example, uniform language, adjustments to the systems and working differently, so that the foundation of clear and one-time registration for multiple use is laid. The second program, VIPP, is an implementation program that realizes both communication between healthcare professionals and communication between healthcare professional and patient. The active involvement of the medical specialist is crucial for achieving the goals of the programs, which is one reason for organizing the congress.

Hospitals have now set up an EPR for the vast majority and have made it accessible to the patient with a patient portal. This raises many questions. Should a hospital want to share all the doctor’s notes with the patient? Neurologist Esther Verstraete (Rijnstate) doubts it. She knows from experience that the excess of information can be quite discouraging for the patient. For example, are the considerations leading to the diagnosis interesting for the patient?

From the audience comes the reaction that we should not want to determine this for the patient. These are essentially patient data, so the patient can decide about them. Internal medicine nephrologist Marc Seelen (UMCG) says in response that the ‘patient’ does not exist. You will have to look at the patient sitting in front of you to decide how much information is needed and desirable. Personalized digitalization, as it were.

ICT: a step deeper

In addition to the developments around the EPR, the patient portal and other communication issues, more is happening in healthcare. Artificial Intelligence, for example. Doctor Joost Huiskens is the Healthcare industry expert at SAS Netherlands. There are many misunderstandings about AI, he explains, such as the idea that AI would make the doctor superfluous. The real question, however, Huiskens tells his audience, is how AI can strengthen the doctor. The doctor must present the problems and the data analyst must provide the solution.

There are few examples of good AI applications. Why is that? AI applications are subject to scientific testing as soon as they are used in practice. This is logical, but you might not expect it if you develop a tool that supports the doctor in his decision-making process by outlining possible options and the doctor is still the one who makes the decision. From the audience comes the question whether the trend is not to develop open source. Huiskens welcomes this for the development of applications. But: ‘As soon as you apply it within the walls of the hospital, it must comply with the rules of the hospital.

The course of action: the how

Knowledge of the developments is necessary, but various speakers today also point to the behavioral change that is needed among doctors. Radiologist Jan Jaap Visser (Erasmus MC) calls on his colleagues to stand up and actively engage with digitalization issues. Radiotherapist oncologist Gabrielle Speijer (HagaZiekenhuis) also advocates taking the lead as a medical specialist.

Speijer points to SNOMED CT; an international medical terminology system for use in direct patient care. Many doctors still write their findings in free text, but how nice would it be if we all do that in the terminology of SNOMED CT? Uniformity and standardization are largely a fact then. Translation into different languages has been set in motion and for the Netherlands that process is fully underway in 2018. ‘You can still join in’, Speijer calls on the attendees.

And also your colleagues

The attendees today may form a vanguard, but how do you take your colleagues with you on the path to further digitalization and uniformity of data? Internal medicine nephrologist Iris Verberk is CMIO at the Maasstad Hospital and tells about the bridge function she fulfills as CMIO between medical staff and ICT. For Verberk, ICT can greatly help to support and strengthen the passion you have as a doctor to make people better. Forge alliances with colleagues who think the same way, she advises. And: ‘Chose your battles, also in this area. Go for what is feasible.’

Head and neck surgeon Guido van den Broek (Radboudumc) changes the behavior of his colleagues with the project. Doctors who already know how to work with the EHR train other doctors in the Radboudumc. Quickly reducing administrative burden is what Van den Broek tells the attendees to do today. By outlining the yield, which is desirable for every doctor, you create the breeding ground for the behavioral change you want: standardization of information and good and efficient use of the EHR. You can immediately want to make quality leaps, but that will not convince colleagues to come over.

From the audience comes a response based on, among other things, the labor-intensive nature of the project. Hospital care is still based on processes from the 1970s. From the audience also comes the relativization that the hospital is after all a complex company, where the privacy of patient data must be paramount. Just some questions that come up:

• If we continue at this pace of change, will the hospitals of today still exist in 2030?
• And what do we think about it when the big data giants start offering more efficient and equally effective healthcare solutions to patients, leaving the hospitals behind?
• Should professional associations not be much more concerned with standardization and standardization in order to make progress and take bigger steps?

Again: the possibilities of AI

Anesthesiologist Bart Geerts (Amsterdam UMC) changes the behavior of his fellow anesthesiologists, nationally and internationally, with data analysis and an algorithm. It all started with the observation that low blood pressure during surgery often precedes complications. But if you only act when there are complications, you are actually too late. Data analysis confirmed the observation.

What was needed then was an algorithm that predicted low blood pressure as early as possible, earlier than the anesthesiologist could see changes in the patient with the naked eye and before low blood pressure was a fact. And so it happened. Now Geerts et al can act proactively. Geerts: “AI allows me to do what I was trained for: to guide people through the operation.” Geerts has not yet published, but the algorithm has proven itself many times. Moderator Bruns: “Behavior change here is the result of technology, of an algorithm.”

How do you actually change behavior?

Paul Smit is a philosopher and comedian and provides a different view of today’s subject. Objectively observing is a difficult story according to Smit. As a surgeon, you can be happy if you see the top of your thumb sharply, the environment of your thumb is at best VHS video quality at best. What does that mean for changing behavior? Smit focuses on the three types of brain that we humans have and which you need to take into account when changing behavior. The first, reptile brain, is focused on safety and acts automatically 99% of the time based on what you believe to observe. The second brain is the mammal brain that is focused on pleasure. That brain teaches us to make things easy; as Smit told us. The third brain is the neocortex, which likes to think.

Safety, passion, and being meaningfully engaged; that is the basis on which behavior change can take place, if you look at our brain, Smit concludes. On those elements, attendees can therefore try to implement a desired change. And: we have to learn to look differently. Don’t think too quickly that we are making an objective observation.

“After today’s session, what will the attendees do differently?” Asks Emma Bruns. On stage, several medical specialists share their ideas. Gynecologist Jeroen Becker (St Antonius) sees huge potential for using technology to encourage behavioral change. And: “You don’t really need to understand computers. Just know what you can do with them.” MDL physician Joyce van Dijk (Albert Schweitzer Hospital) puts the additional workload for doctors, which many are currently complaining about, into perspective. This is a phase, she says. “If we also start digitizing processes, we will save time.” Professor of ENT Henri Marres (Radboudumc) advocates for quick action. The issue we face is about both content and processes, and the doctor must deal with both, he says. And with that, Bruns sums up the day. “Taking the lead” is what the doctor is obliged to do when it comes to ICT issues today.

This event made a deep impression on me and formed my motivation to continue seeking improvement in the communication between doctors, patients, and pharmaceutical companies: essentially the entire healthcare chain! An improvement that leads to added value for all involved. My strong affinity for technology and its influence on people made it increasingly clear to me that technology could facilitate the improvement I was seeking.

On my journey, I gained a lot of experience, learned by studying, and secretly attending lectures from other fields that interested me. But perhaps what I learned most was from the valuable contacts with professors, fellow students, friends, and colleagues who sparked my curiosity and prompted me to new thoughts through their knowledge, skills, and enthusiasm.

My patients over the years have also been remarkable, from whom I have gained so much wisdom. In summary: caring for others, what you do as a doctor, has everything to do with mindset and focus, being consciously open to others! And technology can support you wonderfully in this.

Absolute must

Now, many years later, technology is no longer a nice-to-have for me but an absolute must! I became more and more amazed at how we apply technology in clinical practice and what is actually possible. Unfortunately, that gap seems to be growing, and it does not help me and my colleagues to fulfill the Hippocratic Oath when providing care. Technology can actually ensure that we have a complete picture of a person’s health.

Unfortunately, clinical practice has been purely digitalized, from paper to PDF and folder systems. While all this health information is provided with care by me, my colleagues, and the patient, it is still not available in the right place: it still costs us overtime to gather the necessary information. And unfortunately, the focus of the healthcare chain is not directed towards the value of data.

Valuable communication

Valuable communication arises from a confidential connection between doctor and patient, as I wrote in my previous column. Knowing what each other means and what it’s all about. How you both stand in it. The confidential connection in which mutual expectations and experiences are shared between the patient (citizen) and doctor (health professional). For the most part, this involves listening very carefully and frequently checking whether what you think you understand is really what is meant.

This information is also the basis for what we call data today. And this is also immediately the basis of data curation: doctor and patient agree on the health image it describes. A next step is that more patients and doctors agree on that shared interpretation.

It was sometime in January when I was covering for one of my colleagues and a patient confided in me during an open conversation that she is a professional vlogger herself. “Is producing daily content for the YouTube channel something you’ll be comfortable with once this treatment is over?” I asked her almost immediately, as you are sharing the most vulnerable part of yourself with the whole world. For her, the choice was quickly made. Vlogging had now acquired an additional function: helping other patients by giving them a glimpse into her personal experience. How beautiful it is that I, as a doctor, can contribute to something like this. We have such a trusting relationship, because it takes something to be so vulnerable in this position! I am absolutely open to a patient who wants to help other patients!

Eye-opener

After another consultation, I realize that we were so engrossed in our conversation that we didn’t even have a camera on the table. Later that day, my patient sends me a preview of what she tells her followers about the consultation with me. A beautiful eye-opener of how my words came across, what made the most impression, and how. I make a note of what I need to pay a little more attention to next time.

I also realize how well she translates the consultation from her experience and makes it visually accessible to a large audience. I wonder (again) what brochures and information booklets are actually good for. In my daily life, YouTube is my biggest help, whether it’s an issue with my car, a recipe for my rare culinary feats, or mental preparation (given my fear of heights) for a challenging mountain climb in the Dolomites.

Positive mindset

For my patient, the vlog is an ideal way to be able to watch it back on the couch at home and stay focused on what was really said. Because the temptation to become insecure about certain things between consultations is always lurking. How nice it is to hear those uplifting words again to hold on to. That’s so important for a positive mindset. However, a vlog in the clinic can also raise a series of questions. For example: is it normal for patients to get a glimpse into our practice? Should and can I actually prepare for a vlog? Is every piece of content suitable for a wider audience, and how does it help them? What does the environment look like, was everything tidy, were there no sensitive data of other patients nearby, is the explanation good enough, is the treatment the best?

In fact, these issues are always relevant. Strangely enough, when a video is involved, it can work as a reminder to sharpen things up.

Awareness of the foundation

In society, the awareness that technology is already continuously intervening in our daily life appears to be lacking. We conduct transactions on the Internet without any certainty about everyone’s identity. Personal information is frequently used for financial gain behind the scenes without clear agreements. Organizations seem to be facing more and more challenges in representing a common mission. We see that responsibility based on function or role increasingly shifting to a set of rules and protocols. All this justifying leads to an increasing administrative burden and burnout. While more health data than ever before is being aggregated, healthcare is not escaping this either. And despite all this, technology is still not part of the standard training package for healthcare professionals.

Hippocratic Oath

Based on the mindset in our society that everyone should be able to contribute with his or her exclusive insights, it is possible to use technology together to determine how we can bring these insights to value on data. My conviction is that this interaction between mindset and technology for health (care) can lead to enormous breakthroughs in a global learning healthcare system, but we must tackle this together. Our Hippocratic Oath forms the direction for every physician’s action, the deepest value of which technology is also a part today.

Sustainable care

Just as sewage produced health benefits and substantial savings, the expectation is that the literal release of data will lead to enormous financial gains. Because by means of cooperative peer review you can raise quality and analyze the same data much more often and worldwide. I also envision my practice as a doctor in such a way that what you collect in a consultation is of value to many more people at the same time. I bring in my insights directly and simultaneously obtain real-time intervision while we together feed the system with shared knowledge in an increasingly sustainable manner.

Paradoxical situations as a wake-up call

Interoperability problems threaten direct care In the Netherlands, a temporary exception was made to open the medical summary of patients who had not (yet) given their permission via the LSP (National Exchange Point) during a visit to a first aid department, based on the need to be able to quickly proceed to effective treatment. In the US, we saw a simultaneous relaxation of privacy legislation HIPAA.

Everyone can conclude that problems in the exchange of healthcare information have existed for a long time, they affect everyone’s immediate safety in receiving care. Apart from awareness of the importance of confidentiality when it comes to your healthcare information, the solution is not workable for us as healthcare professionals. Just before the pandemic, the federation of medical specialists made an emergency call about the threat to patient safety posed by inadequate data exchange.

Using data for quicker disease insight

An inventory of AI applications in health and care in the Netherlands in 2020 by KPMG, commissioned by the Ministry of Health, Welfare and Sport, already showed that there’s still something to be gained in several areas. Many initiatives aimed at combating the covid pandemic are fascinating to highlight, such as the use of intensive care data for quick insights with the help of machine learning. An important observation here is the drive of doctors in times of crisis to show how cooperation can lead to bundling of insights and learning from each other’s practice variation with the integration of technology under high work pressure. Nevertheless, many points remained open during the discussion. For example, how to arrange permission to use data in the development of technology (an algorithm). What to do about additional administrative burden in the current work process with systems from which data are usually difficult to retrieve (irrespective of the quality, integrity, provenance, availability and so on), the importance of prospective randomized research in the way in which data are now made available retrospectively. The importance of a joint, seamlessly, and sustainably supported data curation process is thus clearly on the agenda.

Cybercriminals force us to step out of neutrality

European frameworks and legislation such as GDPR can help maintain confidentiality in the doctor-patient relationship. Various forms of breach can be identified: from data breach such as failure to deliver (on time), loss, unauthorized inspection, use or misuse for purposes other than primarily providing care without consent, varying from research, quality registration to development of services in the broadest sense. One step further and we come to cybercrime. The cybercriminal also seemed to plunge into healthcare during the pandemic, unfortunately not with the best of intentions. Healthcare had the highest number of data breaches of all sectors in 2020 , Based on the 2021 Identity Breach Report, the healthcare sector did experience a 51% increase in the total volume of records exposed when compared with 2019. Our profession is threatened by the cybercriminal who operates in a purely financially driven way, as well as public health. The most important areas appeared to be ransomware and disinformation in the era of digital everything, which puts public health and my profession at great risk.

Digital pandemic preparedness turned out to be an issue. Just think of some examples like the PII breach at the GGD, the organization of the entire process of testing and vaccination, misinformation about vaccination and social distancing, digital delivery of covid passports, adoption of covid contact app Corona Melder1 and the Apache Log4j vulnerability found just before the end of 2021.

Measure everything?

Until now, the privacy of the employee has remained underexposed. Installing a temperature scan at the door, logging activity in applications, up to and including a smart toilet and a genetic test ‘from immense involvement’ of the employer. In addition to weighing up the importance, it is important to carefully discuss the objective and conditions. Ideally, the stakeholders themselves determine how they can improve quality in their work. A good example is how doctors in the group of Professor Adler-Milstein at UCSF measure their own behavior while working with the EHR (electronic medical record) to build supportive tools, e.g. decision support.

Connect everything?

Smart devices, and certainly medical devices, are under a lot of scrutiny. Sensitivity when going online and the associated cybersecurity risk, but also from the point of view of functionality and what we expect in terms of medical performance. A hospital secures its devices, but what about these beyond the bricks and mortar? And what about updates of these devices? And what to do with the emergence of all these ‘stupid devices’ at home connecting to the internet posing a risk of a security breach for the medical devices as well? Will an act to the Radio Equipment Directive adopted by the European Commission do enough in this?

From protocols, seals of approval and occasional audits, technology will help us make the move to transparent 24/7 data-driven performance while maintaining confidentiality at the levels where it should, but it will take us as doctors to make it happen. Organizations with digital strategy will take over For all the above reasons, the organization with digital strategy will have the best chance of attracting the best healthcare professionals. All stakeholders in the network must be continuously aware of the ‘why’ behind the deepest values of his or her contribution. In this way, the organization consciously distances itself from the inattentive employee with a ‘neutral attitude’ as well as the money-grubbing cybercriminal. Healthcare professionals expect the organization in which they work to be able to focus purely on care, with maximum support from technology. Just as, for a few decades, we expected the hospital to meet the requirements of hygiene and safety.

Confidentiality by design

Still, there’s a lot to do when it comes to our society and patients becoming aware of the importance of health(related) data and its correct use. More integral stakeholders in the broader health and care landscape should keep in mind the purpose of their work, our Hippocratic Oath, and values. Because I need the overview of the complete health situation of my patient both physically as well as socially and mentally, it means confidentiality of this information should always be guaranteed. It’s a prerequisite for openness, interaction, connection while building upon the trust relationship. In this digital era, we need to have a clear insight where health information is flowing and that based on the (reversible) consent it can or cannot be used for certain purposes. This can upgrade the doctor to a trusted link now that technology supports us in our profession.

Gentle healers

In conclusion, gentle healers, stinking wounds! As a stakeholder in the larger healthcare landscape, it’s crucial that the Hippocratic Oath is also carried out. In the design of the ecosystem, the patient, who is of course central, will be on his own if we do not orchestrate the doctor. This is not obligation-free but the starting point. Let us realize and establish this together.

Confidentiality by design

Still, there’s a lot to do when it comes to our society and patients becoming aware of the importance of health(related) data and its correct use. More integral stakeholders in the broader health and care landscape should keep in mind the purpose of their work, our Hippocratic Oath, and values. Because I need the overview of the complete health situation of my patient both physically as well as socially and mentally, it means confidentiality of this information should always be guaranteed. It’s a prerequisite for openness, interaction, connection while building upon the trust relationship. In this digital era, we need to have a clear insight where health information is flowing and that based on the (reversible) consent it can or cannot be used for certain purposes. This can upgrade the doctor to a trusted link now that technology supports us in our profession.

In short

• Digital developments ask us about our value as a society. For me as a doctor, that is the Hippocratic Oath.
• There’s a lack of awareness in society that technology already interferes with our daily life.
• Sustainable care is about orchestration of people, technology and data. The essence is to be able to provide care in confidence. That means that we openly and transparently stack knowledge and insights. We need to build these principles into a healthy ecosystem now!
• In the design of the ecosystem, the patient, who is of course central, is left all alone if we don’t orchestrate the doctor.

Speijer was a judge at “Get In The Ring 2021” – an annual event where startups and ventures from around the world get the opportunity to pitch their technological innovation while networking. “As a doctor, I am able to see through whether an innovation is really going to contribute to health. I am used to doing a quick “sanity check” on the scientific foundation. Then, I look at the market positioning, what is claimed, and if I could offer that to my patient. And if I become convinced that it can make a serious contribution to health, how would my colleagues receive it,” highlights Speijer.

It doesn’t help but can hurt

Speijer points out that different things are weighed with an investor than with a doctor. “Yet too often, we take it for granted that the design, scale-up and further development take place outside the scope of our clinical practice. Even though these factors affect health, we are betting on, and thus the outcome of our actions as physicians. The adage ‘if it doesn’t help, it doesn’t hurt’ certainly doesn’t apply here. Worse, digitization has an exponentially scaling effect. If it goes wrong, the damage is incalculable. But if an innovation does benefit, then there is an opportunity to improve care exponentially. And that’s what I’m looking forward to as a doctor.”

This can be seen in the way Gabriëlle Speijer evaluated digital solutions as the judge. For example, in the case of “the first AI-based computational method for substantiating treatment decisions in oncology,” according to the developers.

“My first impression was that this option for finding the best-targeted therapy for the patient was too disconnected from practice,” Speijer says. “But it turned out that the developer had incorporated his years of experience from practice into an open and thus testable model. Moreover, it is possible to make a smooth transition from the current clinical trial-based practice to providing insight into large amounts of data using AI and machine learning. Thus it offers clinicians the opportunity to treat in an increasingly targeted way (precision oncology) while learning from their own outcomes based on real-world data. An advantage is also that the developer collaborates with other clinics and parties, always driven by clinical added value. I find that very clever.”

Added value for practice

The main question Speijer wants to her when acting as a  judge during startups pitches is: what added value does this innovation bring to the health care system? “Based on that, I do a reality check to get all the facts in order, to see if what the developers declare is correct and what I could take away from subjective impressions. Confidentiality is an important issue here, as it is the question of how the idea translates to medical practice. Sustainability and agility also play an important role and, of course, the question of whether the developer is open to the environment.”

“We still don’t exploit technology enough to get a complete picture of the patient. That can be done much better. And if doctors are in the lead in the development of that technology, we can achieve an enormous acceleration. This is not a non-committal matter because the technology must benefit our work and the outcomes in health. We need to drive that together,” concludes Speijer.