“Towards data driven health”
Leading experts highlighted how data is already helping us to remain healthy, and how it can drive us towards a healthier future. Data driven health involves combining of data from clinical routine, research data and real world personal data. This is not simple at all! It needs a collaborative effort of all parties involved.
Health-RI facilitates and fosters the Dutch health and research communities in realizing such precision medicine. As Leone Flikweert, CEO of Health-RI stated: “We have come a long way and now focus on connecting health care, research and society. Health-RI is a network organization.” The Health-RI conference enabled all parties and communities involved in health care and research to share information and knowledge.
Keynote Dr. Eimear E. Kenny: Personalized Medicine and the Power of Electronic Health Records
Genomics is the fastest growing technology invented so far. Genomic data have increased massively and costs of this technology decreased dramatically. It’s a great boost for research and a change for medicine and health care.
Genomic studies are increasing in size and scope, the growth over the last few months has been a real gamechanger. Many biobanks are now big enough to accurately predict risk. Some populations have a higher risk of getting certain types of cancer. However, genomics is failing on diversity. Many populations are under or non-represented in databanks. That makes it difficult to analyse the effect of ancestry on the prediction of disorders.
Dr. Kenny argued that it is important to make genomics accessible for medical professionals in all fields. “We need to prepare physicians of the future with more knowledge on genomics. This means education, training and research. They should feel comfortable about speaking genetics in their work.”
Get involved in Health-RI!
Hans van Leeuwen, Dean at the Erasmus MC and chairman of the supervisory board of Health-RI put it very clearly: "We need every one of you to meet the challenges our health system faces." People are getting much older now, but often with chronic diseases. The costs of healthcare are exploding. To prepare for the future, health care needs to make a drastic change."
"The good news is that we have a big opportunity to make this change. We have much health data available from many sources. Data we can put to use for health care and research. However, these data are currently too fragmented. Only if we combine data from all sources, we will profit from its full potential. To do this, we need a proper organization of our data. It is not only about connecting hardware, it’s about connecting people as well. Health-RI is building a solid foundation to realize both."
"The Dutch Federation of academic hospitals (NFU) and Dutch health research funder ZonMw will invest substantially in Health-RI the next three years. However, the Dutch academic hospitals can’t realize our joint Health-RI ambitions on their own. To make the transition from care to prevention, all stakeholders must act now and join forces. Health-RI is the foundation for our ambitions, so get involved!"
FAIRstival and Personal Health Train
As part of the National Dutch e-health week, Health-RI organized a FAIRstival for this year’s conference. To support people start working with FAIR data principles and the Personal Health Train
The Personal Health Train was officially launched by Erik Gerritsen, Secretary-General of the Ministry of Health. He complimented the PHT coalition with their work. ‘Now that you have taken the initiative, the government can look in what way it can support it.’
Gijs Geleijnse of the IKNL presented an example of the use of the Personal Health Train for cancer registration, to show that it is already running the tracks. “There is still much to be learned about outcomes of cancer treatments. The Personal Health Train will enhance the pace of this massively.”
From the patient perspective, Ineke Hazelzet, patient advisor of the Personal Health Train, explained why the PHT will help her. For a research proposal she wants to know how many people become paraplegic every year. Her apparently simple question could only be answered by searching through many files in different treatment centers. Not easy to lay your hands on. The PHT would help her find solutions faster.
Wouter Franke of the National Health Care Institute (ZIN) thinks the new PHT approach to analysing data will help improve quality of health care. Tjerk Heijmens Visser (CZ healthcare insurance): “PHT will speed up innovations for better Health and Care.”
And as the secretary-general from the Ministry of Health, Erik Gerritsen concluded: “The PHT offers great opportunity for the Netherlands to use our good quality data on a large scale. It gives us a competitive advantage compared to China and the US.”
A few other interesting observations at the FAIRstival:
As a FAIR community we need to further get involved with researchers and medical specialists and physicians in a joint journey on achieving FAIR data. Preferably led by clear examples taken from daily practice.
nd how to find the resources to make new and existing data FAIR and reusable?
BBMRI 10 Years
10 years ago BBMRI.nl started building the joint national infrastructure necessary to make maximal use of biosamples, images and data for health research. The BBMRI.nl program was showcased. BBMRI.nl researchers submitted 18 posters.
Combining data keeps you fit
Good health is important, but it requires effort to stay healthy. It helps if you know how lifestyle and genetics affect people's health, especially your own health. How do we gain knowledge and how do we put it to good use in keeping ourselves and other people healthy?
Better data, better care
The Netherlands ranks highly for delivering high quality healthcare. But we can't stand still. We must keep learning and improving. Patient expectations are growing, quality of care and treatments can be assessed and improved, and health and wellbeing move into the center of attention. Meeting the challenge of making all the necessary data available in a learning health(care) system.
Artificial Intelligence isn't just a buzzword. It's the key to handling and analyzing huge quantities of data, and one of the major drivers of future curative and preventative healthcare. Different use cases exemplified the promises and benefits that artificial intelligence brings and help identify how AI can be used to develop and implement health innovations.
Smartphones, wearables and sensors can help to make healthcare better and more efficient. They offer new opportunities for prevention and diagnostics. Mobile health technology is rapidly becoming an important factor in healthcare, allowing treatments to be based on real-world data rather than assumptions. Researchers can use this data to develop and test new innovations.
Mapping the Personal Health Train Community
Many organizations are working hard on implementing FAIR data strategies and working out Personal Health Train proofs of concept. In this session, experiences are shared as a prelude to discussing common goals and requirements for a collective FAIR data infrastructure that will allow the Personal Health Train to start running at full speed.
Help, I want my data to be reused!?
The challenges and enablers for optimal reuse of health data in a learning healthcare system.
Let's go FAIR!
Workshop with interactive program explaining the ‘Why?’, the ‘How?’ and the ‘And then?’ of FAIR data.