On November 23 and 24 2021, Dutch and French health data and Long COVID experts met in the Atelier Néerlandais in Paris for the innovation mission on Data and Health. Seventeen Dutch participants came to Paris to meet and interact with the French ecosystem. The main focus of this mission was to reinforce French-Dutch collaboration in health data exchange and (Long COVID) research.
Good to know: a short aftermovie video of the event was made.
The mission was opened by Stefan Koreneef, Counselor for Innovation, Science and Technology and Antoine Couret, President of Hub France IA during an informal kick-off diner at the 23rd. Both emphasized the role and importance of AI in research with health data. Next was a duo speech of the Dutch Ministry of Health, welfare and Sports and the French Ministry of Solidarity and Health. They spoke about reliable, trusted and secure exchange of health data and spoke about the EU collaboration in times of Covid. The kick-off session was closed by two short presentations of Dutch and French health data exchange programs: The Health Data Hub and FAIR/Health-RI. The Health Data Hub explained that the French program is based on the national data set of healthcare reimbursements. Researchers or companies that have a validated project can access this data via the Health Data Hub to use it in their research. The Dutch approach – illustrated by FAIR (Fully AI Ready), Health-RI, NLAIC – and the Dutch vision on health data sharing: data should be stocked at local secure data stations that can be visited by data trains to give researchers access to this data without the data leaving the data stations.
The different speeches gave enough input for inspirational talks during the informal dinner (NB: This event took place when Covid-19 measures allowed small scale events) with the whole Dutch delegation and a large part of the French representatives during the mission.
Data sharing and Long Covid research
After the introduction the evening before it was time to get to the core of the innovation mission and to talk about and exchange on international data sharing, data for innovation and research and Long COVID research projects. The second day was divided in two sessions: the morning session focused on health data exchange and collaboration in research, while the afternoon session was all about Long Covid: Dutch and French researchers presented their research projects on Long COVID and possibilities for collaboration were explored.
Health data sharing & AI (initiatives)
The morning program started with a discussion between Herko Coomans, international digital health coordinator at the Dutch Industry of health, welfare and sports and Isabelle Zablit, eHealth Europe and International Director at the French Ministry of Solidarity and Health. Their discussion was about health data sharing on an European level and the importance of European collaboration. They illustrated this with the success of the European COVID certificate, which was arranged in seven weeks. In this sort time schedule all member states agreed on the project and procedure and the data of all European citizens became available. Even other countries, outside the EU joined the EU COVID certificate and other counties are in the pipeline. They stated that health is a national affair, but that COVID showed the need for European collaboration. Currently the European commission is also working together with the EU member states on building a European Health Data Space, a European space to stock health data for to support the provision of health care (primary use of data) and to support health research and policy development (secondary use of data). The participants agreed on the successes of EU collaboration, but made the remark that the European commission should communicate more on these kind of successes to show the EU citizen the strength European cooperation.
Healthdata for research and innovation
Second session was a presentation of the brand new PariSanté Campus by its Director General Antoine Tesnière. The campus, founded by five public institutes (Inserm, Inria, PLS Universities, Health Data Hub, Agence Numérique de Santé), will be hosting four mayor research institutes (PRAIRIE, Q-bio, IPM and ISNUS), more than 100 companies and a co-working space: 50% research experts, 50% companies. The ambition of the campus is to make France and the EU leader in digital health. PariSanté Campus has four main objectives:
- Data sharing for health, research and innovation
- Skills development for young students, to train them how to build algorithms
- Value proposition for companies to create economic value
- Ameliorating the efficiency of the healthcare system
Antoine Tesnière said that there is room for Dutch companies and startups to join the campus. As a follow-up the Dutch delegation is invited to visit the centre in 2022. To stimulate the synergy between the residents of the campus workgroups will be created on technologies like AI and specific health issues like mental health.
After this, NIVEL (Robert Verheij) gave a presentation on their research program on caredata and learning healthsystems. Nivel, the Netherlands Institute for Health Services Research, created a primary care database with electronic health records from around 500 general practitioners (GPs) (consultations, prescriptions, year of birth, gender, etc.) of 1.7 million patients, 10% of the Dutch population, and allied health care (physiotherapy, exercise therapy, dieticians, speech therapists and GP out-of-hours services. After approval of the internal procedures concerning data sharing, these data can be used for research, health policy information and disease surveillance, but also for monitoring quality of healthcare or health manpower planning. The data can also be linked to other internal or external data sources on patient level. The biggest challenge is the quality of registrations, however being aware of possible biases in data helps to overcome them. NIVEL is creating guidelines for healthcare specialists how to register.
Third in line was TNO, the Netherlands Organization for applied scientific research, with a presentation of their Digital Health roadmap. TNO stated that Health data in the Netherlands is scattered and that privacy is holding citizens back form sharing their health data. TNO developed together with a consortium and partners the C(are)4Yourself program. A health data sharing program that has three goals: (1) get a proof of concept that health data can be, captured, routed, encrypted, stored, stewarded and reused for specific purposes, with full trust and consent of the involved citizens and reused by both care professionals and researchers in a safe and transparent way, (2) investigate the possibility to unlock and reuse personal health data using already available techniques and (3) having COVID data as a use case.
French data sharing
After a short break it was time to hear more about the Health data Hub and their programs. The Health Data hub is one of the national digital health platforms in France. The main problem today is that the possibilities for data sharing in France are too limited. Healthdata in France is scattered and few is available for secondary use, which makes international exchange difficult. The Health Data hub pointed out that on a European level, very few solutions for data storing and reuse are available. As well, there is a lack of culture to share health data. The mission of the Health Data Hub is to put in place a unified and secured access to French health data. Public and private institutions and patients are involved in the Health Data Hub. The goal is to simplify the access to health data: one organization for the patient, create a secured platform and a structured data catalogue for scientific projects and a to provide toolbox to federate the key health actors.
Long Covid research as a concrete case
After an informal network lunch, it was time to go to the last phase of the mission: Long COVID research projects in France and the Netherlands. In total nine presentations were given by French and Dutch researchers. Below a short description per research project.
- P4O2-covid is a Dutch national program on respiratory research, involving five research institutes throughout the Netherlands (Amsterdam UMC, UMCG Groningen, UMC Utrecht, Maastricht University and LUMC Leiden) and several public and private institutions like Philips, TNO, Ortec and Quantib. The P4O2 program aims to identify treatable traits and innovative personalized therapeutic strategies to both prevent progression of early-stage damage and to reverse established lung damage by stimulating repair.
- Association AprèsJ20 (after day 20) is a French patient association on Long COVID in France. ApresJ20 has four main goals: get Long COVID patients recognized on symptoms, assure multidisciplinary healthcare in all territories, communication on Long COVID for doctors and the general public and stimulate research on Long Covid involving patients. The main challenges today are: to communicate on Long COVID, to integrate the patient expertise in research, to train medical professions and to fund research.
- The Dutch CO-FLOW study of Erasmus MC is focusing on Post Covid after hospitalization. The aims of this study are physical, cognitive and psychological recovery, health related quality of life and aftercare use and satisfaction. Data is collected from several sources: clinical data, regular follow-up consultations, physical tests and questionnaires. Ten healthcare institutions and hospitals are involved in the cohort.
- Maastricht UMC+ started the Dutch CORFU (Corona Follow Up) study. It is a large-scale study in which data of more than 10,000 patients from seven existing studies are combined and analyzed. Symptoms and their causes are mapped in a structural manner in order to properly recognize and treat persistent symptoms after a COVID-19 infection.The analysis of the data also helps to develop a ‘prediction model’ that, on the basis of, for example, a patient’s characteristics or type of complaints, can predict whether someone will develop persistent complaints. This will help with early diagnosis and monitoring, and offers leads for the treatment of Long COVID.
Maastricht UMC+ is also involved in CAPACITY-COVID registry: a European Registry to determine the role of cardiovascular disease inthe COVID-19 pandemic, launched in 2020. CAPACITY-COVID offers a comprehensive data collection tool that facilitates uniform data collection of patients infected with SARS-CoV-2. Thirteen counties and 72 centers are currently involved.
- The AP-HP, presented the current status of several diverse French research projects in on Long COVID. Studies performed in France are focusing on the profile of the Long COVID patient, on the type of symptoms, the improvement of patients and others on the origin of the symptoms. The National agency for Scientific Research (ANRS) launches – in collaboration with the Foundation for Medical Research (FRM) and with the support of the Ministries of Higher Education, Research and Innovation, and Solidarity and Health via CAPNET – a Long Covid call for projects in effects and consequences of SaRS-CoV-2-infection. The call will be open from February 1 to mid-march.
- CLEAR COVID is a research project on individuals with COVID, not yet focusing on Long COVID, but the results might be interesting for Long COVID researchers. Two research teams are involved:
- University of Utrecht and University Hospital UMCU. Their goals are: tissue-specific characterization of COVID-19 disease and development of tissue-specific ex-vivo models
- Hubrecht Lab and Companies. The goals of this team are: clinically-validated nasal airway epithelial cell models for COVID-19 drug development and insight in determinants of disease severity
These studies deliver knowhow on individual airway cell culture and SARS-COV2 infection, the impact of identified association on airway functions, genetic factors and environmental factors (drugs, etc.).
- Nivel together with Radboud UMC, Zorg voor Data, UMCG and Maastricht UMC+, just started in October 2021 the Dutch Long Covid MM research project. In this project several methods and data sources will be combined to to examine the nature, scale, severity, duration and risk factors for persistent COVID related symptoms, as well as the associated pathophysiology and the provided recovery and aftercare and how this was experienced. This study has a special focus on vulnerable patient groups: individuals with low health literacy, low socioeconomic status, migration background, chronic conditions, children, elderly and pregnant women. In this project data from electronic health records (EHR) from general practitioners (GP), GP out-of-hours-services and hospitals will be linked on patient-level and combined with socio-economic data. The second data source is data obtained through questionnaires combined with data from HER. And third, qualitative data will be obtained through interviews with patients and GPs.
- Long COVID Observatory is a French Belgium initiative to gather routine data on patients with the Long COVID. The goal is to develop a patient companion app that informs the patients about the latest findings, gives targeted recommendations and collects patients experience feedbacks. The objectives are easy access to quality-proof information, empower patients and facilitate follow-up and interactions with care providers.
- The Dutch initiative C-support (COVID-Support), originally started as Q-support in 2012 to provide aftercare for Q fever patients. The experiences of Q-support led to setting up C-support. The main goals of C-support are: (1) Aftercare for Long COVID patients, (2) contribute to research on long-term effects of COVID and enhance analytics and reporting and (3) training health professionals how to deal with Long COVID patients. C-support shared some insights in their patient group: 74% is female, between 40-60 years old, fatigue, concentration problems and memory problems are the top three experienced symptoms and the trop tree domains of help requests are medical, paramedical and work. Currently C-support is working with Erasmus MC on a study to develop personal dashboards for patients and professionals to discuss results.
During and after all presentations the Dutch experts expressed their interest for setting up a joint paper on ongoing long COVID studies. Also first thoughts were shared about creating a joint use case project on long COVID (data), demonstrating data re-use, connecting FAIR data points in the Netherlands and France. To be further explored indeed!
Opportunities for follow-up
Besides the bilateral connections that have been made between French and Dutch health data experts and Long COVID researchers with some already concrete actions for collaboration, a few points of opportunities can be mentioned:
- An invitation to the Dutch organisations to visit the PariSanté Campus in 2022.
- The door is open for Dutch research institutes and companies to get actively involved in PariSanté Campus. Together with the Embassy further more concrete opportunities will be explored in 2022.
- The ANRS will launch a call for projects on Long COVID effects and consequences of SaRS-CoV-2-infection on February 1st 2022, Dutch researchers are invited to apply.
- The Dutch Ministry for Health, Welfare and Sports invited the participants to contact them to discuss about EU negotiations.
- Initiative for joint paper on ongoing long COVID studies will be further explored in 2022.
In 2022, the Embassy of the Netherlands in France and RVO will continue organizing knowledge exchange and facilitating collaboration. Stay tuned for upcoming activites!
You can also find this article on the new website of the Economic Network France.