Hospitals generate an enormous amount of data. This data can be used to improve patient care and accelerate scientific research. However, an estimated 90% of this data is not used, as it is locked away in scattered and unstructured data sources. This paper is dedicated to our “raison d'être” - why we started and who we want to be.
Since 2015, LynxCare has been working on making this previously inaccessible data available. In the last few years, I am proud that we have managed to unlock clinical data in Belgium, the Netherlands and the USA within a strict ethical and legal framework.
For example, our platform has already been used to
These early successes have enabled LynxCare to take the lead in the healthcare data revolution, where current practice is shifting towards a value- and outcome-based healthcare system.
Today, we’re excited to announce the next big step in our journey: the completion of a €20M Series A investment round. Swiss HealthTech Investor MTIP led the round, joined by Elaia (FR) along with the company’s early-stage investors, Heran Partners (BE), BTOV (DE) and PMV (BE).
This funding round, which is the largest ever in digital health in Belgium, will allow us to accelerate our international rollout and support our team’s growth.
With this milestone, I want to share my vision on the future of data in health, as well as take a moment to look back on how it all got started.
How we got started
What few people know is that the initial spark of LynxCare started with Sharon Feder and Dr. Michael Victoroff, the mother of a patient and a doctor who helped her gain insights in her son’s complex medical history.
Michael and Sharon quickly realized the potential health benefits of well-structured medical data. Over many years Michael and Sharon helped patients gather their medical records from various hospitals they were treated and build “patient summaries,” a manually curated file of the patient’s medical history to provide a crisp overview of all treatments, medicines, diagnosis, etc. that the patient encountered over the last years. This way they could show based on actual data what had been tested before, what worked and what didn't. They helped hundreds of patients with rare and/or complex medical conditions to find their path to cure and provide transparency to all healthcare providers involved.
Through family, I first got in contact with Michael and Sharon in 2015 and I was astonished by the huge amount of time spent on collecting and organizing medical data. I was under the false impression that data in healthcare was well-structured, like in science – definitely given patients’ lives are at stake. That’s why Dries and I joined forces and committed to help build software that would automate the process and would help doctors gain insight in scattered, complex medical data to accelerate patient paths to cure.
Using data in healthcare for better decisions - not that easy
Only after diving deeper into the issue I realized the magnitude of this problem. As any fellow healthcare professional would note, healthcare is undergoing a strong digital transformation. As a result, massive amounts of data are generated every day - too much data to handle. Hospitals produce 50 petabytes of data per year.1 Many of us though, both care providers and patients, complain that there are little to no insights in that data. Answering a simple question, like what the best treatment option is for x or y, is still a daily hassle. The lack of a digital framework causes data to be stockpiled in inaccessible reports and databases, without analyzing how this data can improve the quality of care for patients. Healthcare professionals today only see the tip of the data iceberg. In fact, a Deloitte study from October 2020 found that harnessing data and AI could save 400,000 lives, €200 billion and free up 1.8 billion person-hours in the E.U. every year.2
As such, we set out to become a big data specialist within healthcare, to act as a partner for hospitals and assist them in their evolution towards “value-based healthcare” or care based on quality. We’re helping them by processing their data in a structured and automatic manner and making it available for analysis. We built a scalable AI platform to benefit patients, doctors, care providers and hospitals.
Hurdles and Support
Considering the Deloitte report and the 400,000 lives a year, you would think it would be obvious that healthcare would adopt these new data and AI technologies as soon as they can. However, as from the first implementations of our platform we got confronted with a healthcare system based on transactions. This “fee for service” model though, is largely independent of the actual outcomes for the patient. Therefore, there were little financial incentives to support those initiatives and technologies that help achieve better outcomes. As a result, the first hospitals we worked with actually did not get any financial return on the value they created and had issues financing. It was thanks to visionary and very engaged clinicians such as Dr K. Corten (ZOL), Dr K. Dujardin (AZ Delta), Dr P. Schatteman (OLV Aalst) and many others that took a leap forward and financed at their own expenses.
Some institutions we worked with later halted collaborations, applied for public grants and started rebuilding what we already offered them. Entrepreneurship is to be promoted wherever it happens; however, public finances should be used for the purpose they were set up - in this case, treating patients. Lastly, what patients don’t know is several organizations (e.g. Electronic Health Record (EHR) vendors), both public and private, block access to one another, making it purposefully difficult to exchange data - even though it concerns the patients. They see data as an “asset,” and by controlling it make people more dependent on their platform. In the USA, 10 years ago, the Affordable Care Act prohibited EHR vendors from blocking legitimate data access requests - the regulators in Belgium/Europe should set and enforce those same rules. This is why we, from the start, promoted an open and FAIR data model. We fundamentally oppose any data ownership and monetization - data should be well-protected and never blocked if there is legitimate interest in all transparency with the patient.
On the other hand, we had big support from the early adopting hospitals, including Maria Middelares, UZ Groningen, UZA, the first studies at UZ Leuven and many others.
This financing round is thus not just a big step up for our company. We hope we can also trigger a movement to more transparency, the fair use of data, a rigorous application of ethical standards and privacy regulations, promote value-based care and scientific research, stimulate entrepreneurship and keep patients at the center of all interests. Not just in Belgium, but Europe-wide and even around the globe.
Knowing what we know now and all the potential medical data harnesses, I believe that in the near future nearly all healthcare decisions will be based on data. Why? Simply because patients, doctors and healthcare authorities need to consider what happened over the course of time in order to improve going forward. Evident as a principle, not that evident to bring into practice in the current data mess we live in.
Organizing and structuring data in a proactive way can help us to shift our current model towards value-based, future-proof healthcare based on quality, but also on efficiency and transparency. Thanks to efficient data management, quality can be measured and healthcare institutions and providers of new treatments and technologies can be rewarded for achieving good outcomes. This form of care is the only one that offers a sustainable framework in which all parties involved benefit: the hospitals, the doctors, the medical technology, but especially the people who need care.
Today many new, innovative treatments (e.g. CRISPR, cell therapy, immunotherapy, etc.) introduced on the market have enormous potential clinical benefit, but come at a (sometimes very significant) cost. It will be essential to measure the actual impact of those treatments on patients to make sure these answer the actual patients’ needs in clinical practice and we, as a society, get the outcomes for what we pay.
The COVID pandemic painfully revealed that swift access to reliable health data is key, both for patient care as well as for finding and assessing new treatments. During COVID, the type of “real world data” we generate showed early on that drugs like hydroxychloroquine were not effective against COVID, despite the wide use within medical practice at that time. This same type of data revealed pulmonary complications after COVID vaccination, complications that you can only see on large populations, in the real world, as opposed to clinical trials with limited, selected patient populations. We need to be more proactive in harnessing the available health data to find answers to patients’ needs and the many diseases that remain insufficiently or undertreated. In Europe and the USA huge volumes of legacy data is our strength and we should use it to keep building the best healthcare systems globally.
Better and more efficient data management will pave the way towards that much needed transparency. It will allow governments to reimburse the best treatment for a condition thanks to data driven insights. Doctors will be able to determine the best method for subsequent cases based on data from previous patients. The patient and his/her data will be at the center. Whether it is a regular cold, a football injury or an acute, worrying condition, as a patient we expect and deserve the best possible treatment. Data can tell us that.
A hidden gem
Belgian hospitals have been early adopters of digitization, including the implementation of EHRs. However, Belgium - like many EU countries - is running behind on data structuring and insight generation.3 In just over a year's time, LynxCare transformed this status quo in the hospitals we work for: data that was siloed and unstructured, we managed to structure and open up for generating insights for clinicians.
On a national scale, where real-world evidence was almost non-existent in Belgium till over a year ago, now many evidence generation studies are conducted together with all participating hospitals. The partnership with hospitals is the main reason for the success of a data-driven healthcare system, and the Belgian collaboration functions as a blueprint for other countries who want to enable real-world data and insights generation.
Data defines the course of healthcare
We plan to further expand on the early success in Belgium, The Netherlands and the USA by expanding into more hospitals and countries. The healthcare system is a complex matter i.e. legal, reimbursement systems, healthcare stakeholders and varies per country. Therefore, to succeed we need good and reliable partners to scale.
In France, we will be partnering with PSIH, the market leader in clinical business intelligence which is operational in over 1,000 hospitals. They have a long-standing reputation of over 20 years working with healthcare data and they are accredited on all levels to be able to host and process healthcare data. A partner with a solid reputation will enable us to replicate our Belgian success. Several government initiatives in France have already been implemented to promote the adoption of digital technology and the structuring of data, e.g. the recently approved financial incentives to build hospital data warehouses. We’re committed to make a success out of our first international strategic partnership.
We are proud that as a Belgian company, we’re taking the lead in unlocking healthcare data on a European and global scale. We're an active contributor to establishing the pan-European Health Data Evidence Network (EHDEN) and are eager to contribute to building the European Health Data Space to make a more inclusive European healthcare system for all patients.
Sharon Feder and Michael Victoroff initiative
To help people that are in a similar situation as Sharon and her son were, together we started an initiative to help, to our best abilities, several individual patients a year with complex and/or rare medical conditions building an overview of their medical history, a “patient summary,” for them and their healthcare providers so they may find a faster path to cure.
Thank you to our team and all the people that made LynxCare what it is today.