Data “visits” and innovative partnerships: How the Netherlands is rethinking data-enabled healthcare

Syanni Kristalijn, MSc

Chapter Lead Medical Value at Roche Netherlands

Koen van Lynden, MSc

Medical Value Partner at Roche Netherlands

Mariëlle Gallegos Ruiz, PhD

Health Outcomes Data Lead at Roche Netherlands

Data “visits” and innovative partnerships: How the Netherlands is rethinking data-enabled healthcare

20 October 2022 | 7min

Quick Takes

  • The current data infrastructure in healthcare systems is generally highly fragmented and disconnected

  • There are fundamental concerns about data ownership and privacy

  • A new data structuring model in the Netherlands looks set to overcome these fundamental barriers

The potential value of data has been constrained by data privacy and ownership concerns 

Fragments of information, evidence, and data surround us everywhere we go. We understand now that harvesting these seeds of knowledge can deliver powerful insights that change the way we do pretty much everything, from the way we bank to the way we shop to the way we take care of ourselves. The potential of data is universally recognized. What is not yet recognizable is how we safely and systematically use data to deliver valuable and valued outcomes in healthcare.

Concerns around data privacy and ownership, disconnected collection systems, and a lack of standardization have hampered efforts to fully utilize data insights within the healthcare system. But one European country may have found a way of overcoming many of these issues by rethinking data-enabled healthcare.

Data “visits” may help overcome the challenges of data sharing 

Stakeholders in the Netherlands are working together on a public-private partnership (PPP) to create so-called data stations that allow people to “visit” data. This means data remain with their owners, but can still be accessed by anyone who may need them to answer key questions on a number of topics, such as how to accurately predict survival rates in cancer or whether certain medicines for COVID can reduce the length of Intensive Care Unit (ICU) stays. Hence creating a more data-enabled healthcare system.

“We are in the middle of a data revolution. The complexity is increasing all the time and it is very difficult to gain an overview of all the different sources of information we have available to us. The system is made up of lots of silos and is very scattered. The pharmaceutical industry is one of those silos,” said Mariëlle Gallegos Ruiz, Health Outcomes Data Lead at Swiss pharmaceutical company Roche Netherlands B.V.     

“We believe that one of the ways we can move to a much more integrated and joined-up system, whilst maintaining control of who is accessing the data, is to shift to a data ‘visiting’ approach rather than a data ‘sharing’ approach. This way the data stay at the source and the questions we need answers to travel to the data – much like the way trains travel to train stations,” Mariëlle says.

Big data in healthcare

All aboard the “Personal Health Train” 

The “Personal Health Train” is a concept that has been developed in collaboration with Health RI, a national PPP initiative in the Netherlands aimed at creating an integrated data-enabled infrastructure that can be accessed by researchers, citizens, and healthcare providers. It has gained support from a wide range of stakeholders, including several academic institutions and medical centers as well as Roche Netherlands.

Rather than trying to establish one centralized database that can lead to problems with agreements on areas such as data accessibility, data standardization, and privacy, researchers at Health RI have found that a connected network is a more workable approach. This is because each data station comes with its own set of rules that clearly lays out what each visitor is allowed to do with the data in that station, ensuring data owners have control over how their data are used.

“One of the biggest problems we are facing right now is information overload and knowing what information can be trusted and how to share that information without breaching people’s privacy. We can overcome these issues by carefully building data stations that structure the data appropriately and also in a tailored way that reflects the amount and level of detail that needs to be accessed,” Mariëlle says.

Mariëlle believes this approach will also help stakeholders manage the numerous sources of data more effectively as it will provide users with a clearer overview of where to go to find what types of information. 

“There’s so much that’s already out there. Everyone is holding their own piece of the puzzle at the moment. By bringing all of these different pieces together, we will be able to complete the puzzle together,” she says. 

Partnering to ensure data-enabled and sustainable healthcare systems

“The complexity of today’s healthcare means we need to rethink how we can leverage data to improve people’s health. Science and technology are advancing at a blistering pace. We are trying to bring artificial intelligence, bioinformatics, and highly sophisticated medicines, like cell and gene therapies, into the system at the very time that healthcare systems are having to deal with a huge increase in demand. Although well intended, it means an already strained system is coming under even more pressure,” Mariëlle says.

One way of helping healthcare systems deal with these pressures is to partner with others to create a connected health data network. This will enable healthcare providers to gain equitable and easy access to key insights from data to help prevent, diagnose, monitor, and treat a wide range of conditions that have a significant impact on people’s lives and can be very costly for the system to manage. Ultimately, this will lead to improved patient care as patients will receive what they need, when and where they need it. 

Focusing on highly prevalent diseases where an early diagnosis may drastically impact outcomes

Heart disease

An example of this is the work Roche Netherlands is doing with AstraZeneca and Cardiology Centers of the Netherlands in order to improve heart care and reduce costs through more timely diagnoses and better monitoring of heart disease.

“At the moment, 230.000 patients in the Netherlands are diagnosed with heart failure.1 However, it is known that heart failure goes unrecognized and undiagnosed in up to 30% of people at risk.2,3 

This is why we are setting up centers to which people can be referred for electrocardiogram (ECG), blood, and renal tests. Under this system, they will receive a definitive diagnosis within two and a half hours,” says Koen van Lynden, Medical Value Partner at Roche Diagnostics Netherlands.      

The partners are also using digital tools, including the Heart Watch application, to measure blood pressure, heart rate, and weight so that any progression in people’s heart disease can be detected and treated more quickly, Koen says. Adding that this initiative will also reduce the risk of missing other diseases, such as renal failure or chronic obstructive pulmonary disease (COPD), that are often mistaken for heart disease due to the similarity of the symptoms.

Type 2 diabetes

An emphasis in the early phases of diagnosis is also placed on people with type 2 diabetes due to the high prevalence and the fact that it is one of the leading risk factors for developing cardiovascular diseases. In another initiative, Roche Netherlands is teaming up with data company Digi.me, digital food tech start-up Happ, and research organization and data company TNO to screen people who may be at risk of developing diabetes. Using a digital platform for healthcare providers as well as algorithms in an app to prompt healthier lifestyle choices including diet, this partnership aims to prevent people from becoming diabetic.

“Type 2 diabetes has a very high disease burden due to complications and comorbidities, but there’s currently no systematic screening for people who are at risk to develop diabetes. Type 2 diabetes is preventable and reversible, however, after detection of the risk, it lacks personalized support and scalable, effective solutions for patients to change their behavior, reverse their risk for developing diabetes and lower their risk for cardiovascular diseases. This is why it is so important to stop people from developing this condition in the first place,” Syanni Kristalijn, Chapter Lead Medical Value at Roche Diagnostics Netherlands says.

The future of healthcare is data-enabled, connected, and collaborative

It is becoming increasingly clear that establishing a joined-up health data infrastructure will help countries everywhere to ensure the best possible health outcomes for their citizens. The pandemic highlighted just how much data we have at our fingertips as well as the vast variety of data sources available. Pragmatic, person-centric initiatives point to how we can start to turn data from a promising raw material into a highly valuable asset.

Syanni Kristalijn, MSc studied Bio Pharmaceutical Science at Leiden University. She has been working in different medical affairs roles within the pharmaceutical industry (e.g. Merck and Novartis) for over 15 years and joined Roche in 2018. Currently, Syanni is leading the medical affairs department at Roche Diagnostics Netherlands and her areas of focus are prevention and early detection. She is working on healthcare transformation projects that contribute to policy shaping and ensuring that the quality of care remains accessible and affordable. Together with partners, she aims to build an ecosystem where lifestyle changes will lead to improved health outcomes, especially in populations that are at risk for cardiometabolic diseases.

Koen van Lynden, MSc studied Innovation Sciences at Utrecht University, followed by a master in Management, Policy Analysis, and Entrepreneurship in Health and Life Sciences at the VU University Amsterdam. He joined Roche in 2016 and works in Medical Affairs focusing on cardio-metabolic and critical care. Over the past years, he supported more than 30 clinical biomarker studies. He is committed to improving access to the right diagnostics for patients in these disease areas, enabling timely diagnosis and adequate treatment initiation. Currently, Koen is working with partners to transform care pathways for patients at risk of, or suffering from cardiovascular diseases like heart failure by combining innovative diagnostics, data, and treatments.

Mariëlle Gallegos Ruiz, PhD studied Biomedical Sciences at the VU University Amsterdam. After her studies, she obtained her PhD in research on therapeutic targets and biomarkers for lung cancer, using microarray, gene expression profiling and sequencing. In 2008, she moved to Roche Netherlands where she started as a clinical research associate supervising clinical studies with research phase medicines. She was active as a medical manager to bring medicines to market, and performed internal policy-shaping for value-based healthcare. Since 2019, she has focused on making healthcare data more accessible and intraoperable. She obtained her Data Science in Health certificate at the Jheronimus Academy of Data Sciences in 2020. Her professional goal is to let innovations in healthcare enrich daily life based on individual needs.

References

  1. Hartstichting. Article available from  https://professionals.hartstichting.nl/actualiteiten/pilot-vroege-herkenning-hartfalen [Accessed October 2022]
  2. van Riet et al. (2014). European journal of heart failure, 16, 772-77. Article available from https://pubmed.ncbi.nlm.nih.gov/24863953/ [Accessed October 2022]
  3. Boonman-de Winter et al. (2012). 55, 2154-62. Article available from https://pubmed.ncbi.nlm.nih.gov/22618812/ [Accessed October 2022]

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