“Data driven doctor becomes datacurator of patient data”
“Data driven doctor becomes datacurator of patient data”

Gabrielle Speijer, MD

ICT&Health, 12/2019

“Data driven doctor becomes datacurator of patient data”

When it comes to investing in ICT, facilitating fast, effective communication between healthcare professionals is a neglected one. The emphasis is mainly on supporting the financial-administrative processes with systems such as an electronic patient / client file. “However, it is unethical to deny healthcare providers the technology that is crucial to providing good care,” say STZ director Fenna Heyning and radiation oncologist Gabriëlle Speijer. “It is imperative that a physician can share insights about a patient easily, yet confidentially, with other healthcare professionals.” That is why they are committed to the data-driven doctor, who thanks to modern technology has insight into all health aspects of a patient. To achieve this, Speijer is working on the new communication platform fluKs, with which she has been chosen by HIMSS as one of the 50 global pioneers of digital healthcare innovation.

Discuss together how things can be improved for a patient and immediately arrange for this to actually happen. This was the daily routine for Heyning and Speijer when they got to know each other ten years ago and started working together. “It was seen as special, especially because we came from different hospitals, Gabriëlle from Haga and I from HMC,” says Heyning, who was working as a haematologist at the time. “But it was only logical for us. After a short time, we evaluated the changes in the care process and made adjustments where necessary. Thanks to our short lines of communication and the opportunity to experiment in a safe way, we were able to continuously improve the care for our patients. And we both find that essential to be able to practice our profession well. ”

Heyning and Speijer had expected that the collaboration between doctors and other healthcare providers would become much easier due to the rapid developments in the field of communication technology. To their frustration, the opposite happened. With disastrous consequences, which Speijer in particular experiences in practice every day. “It takes me so much time and effort to gather the correct information about my patients that I am always afraid of overlooking that one crucial value. And in my profession it is about life and death. I think that’s a really blind spot. ” Heyning and Speijer see this as a medical mistake, which they want to put an end to as soon as possible.

Cultural paradox

“Until the beginning of this century, new technology was almost always immediately made available to doctors,” says Heyning. “But in the past ten years, we have put increasing emphasis on safety and quality in healthcare. Protocols and guidelines were written and we then started to make sure that everyone adheres to them. Safety is important, but healthcare is now very closely regulated. This puts tension on the professional autonomy of doctors. And in my view it is precisely this that makes the difference between medicine and medicine. We have entered a tick culture that is already taught in the training. ”

“At the same time, we say to healthcare professionals: the world is in transformation, get off the beaten track, think out-of-the-box and do things differently. That is a cultural paradox. How should you do that in an environment where you have to comply with all the rules and where the penalty for mistakes is huge because it involves human lives? We have to change that together. ”
As a first step in that direction, Heyning mentions that within the 26 top clinical hospitals of the STZ, clinical practice, research and training are more closely interwoven and an open atmosphere is created, in which experiments can take place and mistakes can be made.

Mammoth tanker

The tick-off culture in healthcare has been reinforced by the fact that all protocols and guidelines have been digitized within EPRs over the past decade. This has resulted in systems that healthcare professionals experience as a mammoth tanker: they entail an enormous administrative burden, are inflexible and difficult to integrate with other applications. ”

“The latter is necessary, because an EPD contains only about 10 percent of all healthcare information that you can collect about a patient,” says Speijer. “It is usually briefly in a cure setting, while everything that happens outside of it also contributes to the outcome of the treatment. Insight into psychosocial, lifestyle and other data from health apps, but also new knowledge that arises by combining data between various domains via AI, would give us more control over the health and well-being of our patients. ”

Virtual meeting room

The biggest annoyance for Speijer, however, is that she is not digitally supported in communication with her colleagues inside and outside the hospital. “Bulky files are being pumped around, supplemented with e-mails, faxes and all kinds of other notes. That is an unworkable and from a medical point of view undesirable situation. ”

It also disturbs her that a doctor cannot choose the ICT solution that best supports him or her in the work, while you can download any app you want on your smartphone. “We often have to do it with just the EPD. This means that we have insufficient insight into the health aspects of the patient, which are decisive for successful treatment. ”
“With the current state of technology, this can and must change, says Speijer. That is why she has sought cooperation with healthcare ICT specialists Han Kohar and Peter Walgemoed. Together they have developed the new concept “fluKs”, a virtual consultation space in which healthcare professionals can quickly and clearly share their insights about a joint patient.

First use case

To demonstrate the effect of fluKs, Speijer and her partners first developed a use case for a patient with breast cancer. FluKs looks like a digital bulletin board, on which healthcare providers around a patient can post information about the first contact, diagnosis and treatment plan. Not only in text, but also the results of examinations and scans, which are imported from the existing IT solutions of the healthcare institution. Via the central “bulletin board” all practitioners involved with the patient can consult with each other online and give their approval for steps within the treatment.

Another practical aspect of fluKs is that other applications that are important to a practitioner can be opened within the platform. “In the case of breast cancer, as a radiologist, for example, I can choose the viewer of my choice to enrich the mammography. Or consult a decision-supporting application, ”explains Speijer. “In this way, decision support, predictive tools and artificial intelligence can be immediately integrated into the work process.”

Speijer considers this freedom of application important. “I want to work with the best technology for my patient and I don’t know if that’s the case until I’ve looked at how it works clinically. In addition, technology has an increasingly shorter shelf life due to the fast pace at which new developments are entering the market. Because of the way fluKs has been designed, you can take full advantage of this. ”

Learning from every patient

Because it concerns confidential information, authentication – only an authorized healthcare provider gets access to fluKs – and patient consent are included in the design of the platform. “But we would like to learn from every patient,” says Speijer. “We do this by immediately capturing valuable information for the patient in the process, both for direct knowledge sharing and long-term use.”

FluKs stores patient data in a data safe, in the name of the healthcare provider and with the consent of the patient concerned, so that the use of the data is GDPR or AVG proof. Speijer: “This means that this patient data can be used to work beyond the walls of institutions. In doing so, we provide insight into when and for what the patient has given permission and what is done with which data where. Moreover, a patient always has the option to only give consent for certain parts or to withdraw consent. ”

“On this basis we let the healthcare provider act as datacurator of patient data, restoring the natural role of the healthcare provider. Confidentiality is restored in the care relationship: the patient can trust that the doctor is aware of his entire health situation. In addition, patient data will be securely available for scientific research and we can display complete and well-defined information in the patient’s personal health environment. ”
Linking research to practice

FluKs is now still in the concept phase. Over the next six months, Speijer and its partners will be looking for relevant parties and investors who want to participate in this model. Speijer: “I am also in talks with various stakeholders to link scientific research to the use cases. In this way we immediately learn what works better and what works less well. And we can show how scientific research can coincide with practice, so that the daily learning of every patient becomes the normal course of events. ” The first tests of the platform will be completed in mid-2020, after which the first upscaling can take place.

At the administrative level, Heyning is also working on better digital support for healthcare professionals. “If we strive for the right care in the right place, we have to disruptively organize care differently. Across the existing silos of primary, secondary and third-line care. This is only possible with a different mindset of healthcare administrators and professionals. And it requires the use of cutting edge technology, ”says Heyning. “Gabriëlle and I feel called to be at the forefront of this. But I am in favor of ‘think big, act small’, so move step by step in the right direction. ”

Heyning believes that the financial incentives should be brought into line with this better. “From health insurers, but certainly also from VWS. When I look at supporting innovation in hospitals, the focus is mainly on the UMCs and some top institutes. But we also combine clinical practice with research and training in our top clinical hospitals to advance new developments. The current compensation is far from sufficient for this. Upscaling will then remain a utopia. ”

FluKs base for HIMSS Future50 nomination

In June 2019 Speijer presented the concept for fluKs Collaborative Space at the HIMSS Europe Conference in Helsinki. On this basis, she was named Future50 International HealthIT leader in October.

FluKs is a virtual consultation space in which healthcare professionals can share their insights about a joint patient. This simplifies mutual consultation and bundles patient data, so that every treating care provider has insight into the entire health situation of the patient. In addition, best-of-breed solutions are available within the platform, allowing healthcare professionals to use the applications that best support them in their work.

The architecture of fluKs has been chosen in such a way that the concept can be scaled up, both within a specialism and beyond, nationally and internationally. To this end, the concept is in line with international standards for interoperability and coding system. Speijer recently founded the company CatalyzIT to further develop and market fluKs.

Contemporary Hippocratic Oath

Speijer tries to propagate its mission as broadly as possible, not only through HIMSS, but also through professional associations, training courses and professional platforms. Considering good digital support as indispensable to their profession, she has also formulated a contemporary Hippocratic Oath:

As a healthcare provider, I promise to entrust care and health to my patient. For this I will:

  • Using the technology available.
  • Make healthcare information valuable.
  • Make the healthcare information available to the patient and the knowledge network of colleagues.
  • Treat healthcare information confidentially.

Speijer calls on all doctors to join this via #DDD, or #DataDrivenDoctors.

About the author

Gabriëlle Speijer is a Radiation Oncologist at the Haga Hospital, founder of the healthcare innovation company CatalyzIT, HIMSS Future50 International HealthIT leader and member of the ICT&health editorial board.