Peter Boogaard chaired the data driven health lab seminar. Below you can find his summary of the seminar.
DEBRIEF 1st Data Driven Health Lab Seminar – Rotterdam Erasmus MC 13 DEC 2018
Our diaries are often solid booked, so time to spend to attend seminars is constantly under pressure. So, there must be a very good reason to make such a decision. I had the opportunity to chair the first Data Driven Health Lab Seminar at the Erasmus Medical Centre in Rotterdam. The ErasmusMC performs over 15.000 lab diagnoses for monogenic diseases / year and approx. 25.000 Non-Invasive Prenatal Tests (NIPT) / year. Over 50 delegates participated in the full day program, which included over 10 presentations, lively discussions and great opportunities to network during the breaks. Due to new regulations, such as the GDPR (in NL it is called AVG), citizens will have significant more rights to access all of their own scientific data. This mind shift will result in a new way how health organizations acquire, process and store data. The seminar was the official kick-off to drive the data driven health lab initiative and understand the needs to deliver this service in the future across multiple stakeholders such as genetics, pathology, radiology, Instrument and data service and infrastructure providers.
Overall the program included several case studies and general trends, but there were three particular topics that triggered attention. 1) GENE PASSPORT - Citizens will have the right to have access to their own personal information. 2) Data must be FAIR (Findable, Accessible and Interoperable and Reusable) compliant and finally TRUST is the most critical factor to assure public acceptance in healthcare. Let me share you some of the highlights which as it presented by some of the keynote presenters.
Prof. Hofstra, Head of the Department of Clinical Genetics at the Erasmus-MC, opened the seminar and shared his vision how to prepare for the journey to create a data driven lab. He highlighted the benefits of a “Gene Passport”. This will enable citizens to have easy access to their own data when consulting healthcare providers. It was concluded that there is still a lot to do before this service can be made publicly available. Bert Eussen (Clinical Genetics department) introduced the importance of data be compliant with the FAIR mindset. He shared examples including the ArrayNL project, to ensure the data is Findable, Accessible and Interoperable and Reusable.
Niall Mc Donagh, Director of Microsoft in western Europe, gave insight how hospitals are building strategic blocks for their successful transformation. It was clear that no single strategy exists. While in Finland the Platform first and then think solutions was adopted, in Sweden the opposite was successfully executed. It was discussed that scalable infrastructure is mandatory to allow sustainable execution.
Sofie v.d. Meulen, a senior domain expert on Lifesciences GDPR processes) shared insights that GDPR was NOT designed to prevent organizations from using personal data, but to strike a balance between protecting individual fundamental rights for privacy and the need to “free” the data economy (free flow of data in the digital single market) by a set of harmonized rules in a regulation for all EU Member States.
The last presentation before the excellent lunch was presented by Ron Roozendaal, CIO Ministry of Health, welfare and sports. His overall message was loud and clear. To let your data work for health, TRUST is the key word to get acceptance and support by all stakeholders. As a direct result the role of the health professional will fundamentally change; therefore, education needs to be adjusted.
André G Uitterlinden, Genetic Laboratory Department of Internal Medicine, presented how the Genome-Wide Association Study (GWAS) has brought us a culture change in scientific research: consortia/team science and new biology of common diseases/risk factors. The cost for analysis has been dropped significantly from over 800€ to under 30€ enabling to allow genotyping on all patients at Erasmus MC to create better treatment proposals.
The mobility of patients has increased significantly. Herman Pieterman, Radiologist/head of patientcare Radiology ErasmusMC and Chairman of technique section Radiological Society of the Netherlands, shared that patients expects better care in specialized hospital. The changing role of Radiology in the data driven AI future is significant. While the largest, most complex, and heterogeneous medical image data set is formed by all the examinations stored in local PACS of all hospitals, we need a common platform to support re-use of data to perform AI (deep learning). Herman highlighted factors which contributes to AI: 1) AI processes should be developed with end-user. It should be integrated in the workflow. 2) Both research and clinical data should be FAIR compliant 3) To make AI work, assure that all relevant meta data is acquired consistently.
Egbert Heuvelman, Author-e BV, presented the TrustDocA collaboration platform. The platform supports using Shared Standard Operating Procedures across organizations. The trusted platform Reduces the risk profile on SOP documents by implementing our online collaborative authoring application which will eliminate process logistical errors.
Peter Walgemoed, Founder of Carelliance, presented how TrustDocA is part of the FAIR Array Lab data platform. He also presented the data co-operative development with Holland Health Data Co-operative. In 2027 it is expected that 100 million Digitally Connected Healthy EU Citizens requires a trusted platform to share and have access to their own data. To enable a free flow of Health Data in the European Digital Single Market, a new mindset old vs. new data co-operative value chain will be required. New technologies such as decentralized Identity (DID), Blockchain and organizations like Medical Delta will facilitate the requirement. Peter highlighted how the platform supports FAIR, TRUST by design to allow to create the GENE PASSPORT as was initiated by the first keynote speaker.
John Wise, Pistoia Alliance presented the importance of a pre-competitive collaboration in a data-driven healthcare setting.
At last, two interactive panel discussions challenged the impact of new technologies such as blockchain and cloud, importance of public and private partnerships. An informal drink reception concluded a well spent day at ErasmusMC in Rotterdam. We have started the Data Health Lab journey. I myself certainly look forward to the next seminar and hereby thank the ErasmusMC for their hospitality. It was a day well spent!
Peter Boogaard - Chair Data Driven Health Lab Seminar
Peter's opening presentation can be found here.
The call to action for the audience can be found here.
The closing wrap-up can be found here.
Peter's website. Industrial Lab Automation - www.industriallabautomation.com