Covid-19 as a perfect storm for citizen participation

Egge van der Poel
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Data is viewed as a valuable asset in other industries, but healthcare lags behind in that regard. The current data landscape quite accurately represents the Dutch healthcare landscape: fragmented with many types of specialisations and sub-specialisations. Knowledge and new insights are gained in many different places. Knowledge that bears a lot of value, but barely transcends the data silos. As such, data is part of the current fragmentation in our healthcare system and sharing and applying data remains difficult. A missed opportunity.

Data as an enabler of value-driven healthcare

Then came the Covid-19 pandemic in March 2020. A wake-up call telling us that good healthcare is not a given. Anyone could catch the coronavirus and, unfortunately, succumb to it. This made the pandemic a perfect driver for a different conversation about the role of data in the healthcare process, because “we can only beat corona together”. After all, healthcare is no longer the domain of healthcare organisations alone. It involves the well-being of humanity which makes it a holistic issue. We often hear about visions for ‘data-driven healthcare’. But it would be more accurate to describe it as data-driven processes as enablers of Value Based Healthcare. Healthcare that revolves around the individual when it comes to their healthcare process, adjusting their treatment based on the type of affliction, health condition, personal characteristics, wishes and needs of the individual; their context. Data supports the decision-making process of value-driven healthcare: both in making results insightful and making decisions together.

It is important to realise that a single source of data is insufficient to offer patients proper guidance. We need to incorporate different information layers to improve our decisions. Citizen data plays a vital role in that regard. After all, the healthcare institution is only a passer-by in a person’s life. This means that data collected by the individual themselves deserves a much more central role in the healthcare process. Plus, citizens collect an increasing amount of data about themselves, for health and well-being purposes, in part due to the rise of self-tracking technology (quantified self). During the pandemic, healthcare professionals began incorporating data collected by the individual via step counters, pulse frequencies and saturation values in smart watches and diaries about dietary patterns. Just to get an initial indication of whether or not someone had contracted covid-19. The Lifelines Corona Research Project created a Corona Barometer to track risk factors that may contribute to someone developing serious symptoms from a corona infection, with the help and data of 135,000 Northern Netherlanders. Data was a leading factor for ramping up or alleviating pandemic-management measures.

Digital input demands digital output

Covid-19 formed a perfect storm for citizen data obtaining a central role in the healthcare process. But the storm is losing strength now and we have yet to reap all the potential fruits. The healthcare industry still relies on existing IT systems and data silos based on old business models. Healthcare organisations are scrambling to implement digital point solutions for specific monitoring problems. And separate PGOs are being built for specific ailments. Point solutions that only exacerbate the fragmentation and complexity of the data landscape. In my opinion, this digitisation process in healthcare remains overly focused on digital input and not enough on digital output.

It is vital that we start seeing data as an enabler for value-driven healthcare. We need to stop approaching data as an IT cost: data is not an IT thing, but an idea thing. Smarter use of data will enable us to test existing ideas and formulate new ideas more quickly. In short, smarter use of data to learn from relevant information more quickly. Data as an enabler is not considered self-evident just yet but there are examples where citizen data plays a more central role in the healthcare process. Patient-reported results (PROMs and PREMs) are often incorporated in the primary healthcare process. Studies show that patient-reported results offer benefits both to the patient and the physician. iPads are being distributed to home care patients more and more, in order to map their well-being based on qualitative questions. And citizen data plays a central role in the national network ParkinsonNet as well. Continuous measurements are being made using a smartwatch and a digital platform, for example, and messages and files are exchanged within the community to stimulate knowledge sharing, collaboration and experience sharing.

Stop treating data as a lead ball

Data will help us improve and accelerate learning capabilities within organisations. But this subjects the healthcare ecosystem to a taxing transformation. One that requires continuous attention to aspects such as privacy and trust. Although citizens are collecting more and more data for health and well-being purposes, the relationship of trust between citizen data and healthcare remains fragile. Partially due to the high prevalence of data leaks in the industry. We need to make sure that citizens retains ownership of their data. While providing data stewards to create value from that data within the healthcare system. The FAIR guidelines can serve as a starting point to make (meta)data retrievable, accessible, exchangeable and reusable. Across the entire healthcare chain. From citizens via healthcare providers all the way to researchers.

This demands a transformation that will affect healthcare culture as well. After all, we remain overly focused on acute care while underrepresenting the distant future and its potential. In the now very well-known series New Amsterdam, the eccentric dr. Max Goodwin takes charge of America’s oldest hospital as its director and shakes things up to save the lives of patients. I would like to transform his famous sentence “How can I help” into “How can we learn”. That is the question we all need to be focusing on. Where we use data to bridge the gap between learning and applying. A bridge that will allow us to create value in various decision-making processes and expand and accelerate our (collective) learning capability.

Data is not the new gold but we, the healthcare industry, should stop treating it as a lead ball. Let us not allow the storm of covid-19 to pass in vain.

Many buzzwords are currently circulating in healthcare, such as Data Science, Big Data and Artificial Intelligence (AI). Data Science is an interdisciplinary field of research involving scientific methods, processes and systems for deriving knowledge and insights from data. Data scientists are currently focusing on all kinds of issues and areas of application for data in healthcare. AI is one of the tools available to a data scientist. AI helps us recognise patterns in large datasets. This allows us to learn from our past while making prognoses for the future. And Big Data is the raw material for AI. AI was already boasting appealing perspectives for the future of healthcare pre-covid. The term is being thrown around in healthcare more and more generously while the future has not necessarily drawn any closer.


Egge van der Poel

Egge van der Poel is a healthcare Big Data expert. He has a PhD in experimental particle physics and a Bachelor’s in philosophy. He sought and found the Higgs particle in the CERN particle accelerator in Geneva. Today, he has been a Data Scientist and a popular speaker on Big Data for several years. In addition to these activities, he acts as a supervisor, Executive professor at TIAS and Academic director & Team leader Digital health at JADS. He considers it his mission to transform the role of data in healthcare.