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Health-RI 2020: Joining forces to act now

February 07, 2020 | By Tess Korthout

Health-RIThe Health Research Infrastructure (Health-RI) conference, on January 30th in the Jaarbeurs Utrecht was kind of a “home game” for us as The Hyve’s office is only a few blocks away. Even better: the event was sold out! It was pretty special to be surrounded by so many like-minded people and discuss the power of data science and technology for improving healthcare.


If I were to summarize the day in a few sentences, I’d say there are two take-home-messages:

  1. A culture-change is needed to convince all professionals within the healthcare system that big data can be used to improve the system.
  2. Data needs to be FAIR (Findable Accessible Interoperable and Reusable) in order to be able to learn from it.

Both themes are something that HealthRI can play a big role in, which was discussed during several talks and meetings. 

 

Transforming genomic data into medical information

The day started off with an inspiring talk by Dr. Eimear Kenny, a leading researcher in the field of population genetics from Mount Sinai in New York. She perfectly illustrated the impact of genomics on our healthcare system by sharing her research on Steel syndrome, a previously under-characterized disease caused by a single DNA mutation. Genome sequencing helped doctors better understand the symptoms and improve treatment.

I was on the edge of my seat, especially when she said:

 

“Genomics is the fastest growing technology that humans have invented”

 

The number of Genome-Wide Association Studies (GWAS) is growing exponentially, and this is a game-changer for its power because a critical sample size is needed for accurately predicting risk (which Kenny estimated to be around 1 million).

She mentioned the first take-home-message of the day: a culture-change is needed to transform genomic data into medical information. For example, there are not enough genetic counselors to help all patients understand their results. At Mount Sinai, they tackle this issue by providing genomic modules that train medical professionals how to “speak genomics”. In addition, they use smart tools to transform genomic results into a visual “dashboard” that provides an intuitive overview. 

Although these changes will take time, Kelly is hopeful: a recent survey showed that most Americans are curious and optimistic about human genetics research.

Americans' opinion on human genetics research

Next steps for HealthRI

As Kees stated in a blog post last year, the biggest strength of this network is that it helps build a powerful community. This vision is definitely shared by the board of Health-RI, as Hans van Leeuwen (chair Strategic Advisory Committee HealthRI) stressed:

 

“We are getting older and we need to act now”

 

There is a large need for centralization of the fragmented health care landscape. Implementing Artificial Intelligence (AI) on a large-scale can be improved if there is a solid foundation, and Health-RI can be that foundation. Wiro Niessen (CTO Health-RI) focused in his talk on the power of linking research data to clinically relevant data. This allows us to answer questions such as: Was this treatment useful? Should we treat or not? This led to the second take-home-message: These questions cannot be answered if the data is not FAIR. At The Hyve, we have been very passionate about helping researchers applying the FAIR principles, as discussed previously in several blog posts.

 

Launch of the Personal Health Train

Personal Health trainThe highlight of the day was the launch of the Personal Health Train (PHT): a network platform to enhance personalized medicine and AI in healthcare. The idea is fairly simple: the platform brings the analysis (train) to different data sets (stations). In this way, data from all over the world can be combined, allowing for powerful analysis of medical data, without the need for data to leave its physical location. You can find more information on this approach in this paper and this video
There was lots of excitement about this platform among the participants, so I can’t wait to see new projects kicking-off after this official launch by the secretary general of the Dutch Ministry of Health, Erik Gerritsen.

 

During the Q&A session, the second take-home-message was discussed extensively: how to bring different communities with very diverse needs together? This raised the question of how to convince physicians to share their data, again pointing to the culture-shift that needs to happen. Stakeholders should move from giving away their data to collaborative research by data sharing. Leone Flikweert (CEO Health-RI) mentioned that Health-RI will facilitate this change by implementing a strategic committee that provides sharing conditions. This will help bring all stakeholders together, researchers, physicians and patients.

 

Real-world examples of data-driven health

New technologies are already intertwined with our daily lives, and provide potential for improving our health. During the parallel sessions in the afternoon, Bart Verkerke (University of Twente) reminded the audience that humans are not sensorized at all. He went on to showcase the capabilities of technology to improve health by giving examples of relatively simple measurements or devices. For example, did you know that a good measurement for alertness is how often you use your backspace key? And that there are small detectors for teeth or contact lenses that can measure blood glucose levels? And finally, a microphone that detects fatigue by measuring your oxygen and CO2 levels?

Remote monitoring has great potential for early detection of health problems and can improve quality of life in many different areas. This was exemplified by Pieter Jelle Visser (VUmc) who showed the potential of using smartphone data to detect Alzheimer’s disease in an earlier stage. This project is well-known to us at The Hyve as they use the RADAR-base technology (see our blog posts for more info). The Alzheimer project is still in an early stage, but it was fascinating to hear that for example typing speed without pauses seems to be an indicator for disease detection.

 

Concluding remarks

The whole day was filled with presentations on many exciting projects and this overview was just the tip of the iceberg: new innovative, data-driven projects are launched every day! It is truly fascinating to see the potential of using data science and technology in healthcare, which will ultimately enable the transformation to a more preventive healthcare system. At The Hyve, we aim to facilitate these projects by providing our expertise in FAIR research and stimulating collaboration by using open source software. If you have questions on FAIR,  feel free to contact us.