France launches Long Covid roadmap and invests 10 million in research
The number of Covid-19 patients with long-term effects is estimated at 50 million worldwide. These symptoms have a huge effect on people's well-being: they have completely lost their pre-Covid lives. A "shadow pandemic" is what it is called now that the contours of this chronic form of Covid, also known as Long Covid, are becoming sharper. France presented its Long Covid roadmap in March, while the Netherlands still lacks a national "feuille de route". The aim of this French roadmap? More research to better understand this form of Covid and thus to come to better diagnosis and treatment. Something Dutch and French researchers already exchanged about during the end of 2021 during a seminar at the Dutch Residency in Paris (read more about this in this blog). More data and finance is necessary to be able to do profound research. An international research project could offer a solution.
Impression of the AI & Health event in November 2021.
What do we know about Long Covid?
The reports and roadmaps that do exist emphasize the fact that there is still a lot we do not know. It is a new disease and research takes time. The current estimate is that about 10% to 20% of people who have had covid still have symptoms after three months, varying from extreme fatigue, reduced cognitive ability, shortness of breath, muscle pain, metabolic problems, hair loss, impaired taste and smell, sleeping problems to mental problems such as anxiety and depression. Many of these effects were previously not recognized or registered as Covid-related and dismissed as burnout, overwork or depression. This makes it difficult to make a good estimate of the actual numbers. These symptoms also resemble post-infectious diseases such as chronic Lyme disease.
Besides personal suffering, this also creates a huge social problem; these people can no longer live and work as they did before covid, resulting in absenteeism and dropout. Long Covid appears to be relatively common in professional groups such as health care and education professionals, professionals in crucial jobs that remained working and exposed to covid during the pandemic. These people are unable to work or are less able to work and often do not qualify for (financial) support due to a lack of recognition and acknowledgement. This is creating societal challenges as well.
What we do not yet know is why some people become victims of Long Covid and others do not. Nor what the effect of vaccination, medication or of age or gender is on the course of the disease. This needs to be researched, but as many cases are not registered as Long Covid, the amount of data that can be researched is limited. Combining data sets internationally may offer a solution.
What do the French propose as an approach?
In the long-covid roadmap, the French government presents 3 pillars:
1. Improved care of patients with Long Covid, including:
- An investment of 20 million EUR to build a care network around Long Covid patients.
- Developing diagnostic criteria for the disease.
- The development of an online platform for coordination of care for both Long Covid patients and healthcare professionals.
2. Increase knowledge of the disease, including:
- An investment of 10 million EUR in targeted research into Long Covid
- Better registration and follow-up of post-covid patients.
3. Strengthening the understanding of Long Covid among citizens and healthcare professionals, including through:
- Active information campaigns to make people aware of the disease.
- Investing in experts in the field of Long Covid.
- Investing in international knowledge and scientific networks to share more knowledge.
- Integrating patient organizations in the design of communication campaigns.
The patient association for lung Covid patients in France, Après20J(ours), also present at the NL-FR seminar at the Dutch Residency in Paris, recently spoke about 4 pillars:
1. Recognition and acknowledgement
2. Care and rehabilitation
Now that recognition is beginning, among other things through the serious approach of a “feuille de route”, it is important to take the next step, says Pauline Oustric of Apres20J. There is a need for more research, especially the link between diagnosis and care perspective. The different symptoms are becoming more and more known, but how they interact and what they mean for a fitting care-plan is still a big unknown. Without proper registration and understanding by healthcare professionals, it is difficult to map the extent of the disease and patients, and thus to conduct research. Larger investments are also needed to tackle research on an international scale, but the 10 million in France is a start. At a seminar organized by the British Embassy in Paris on 31 March, English and French researchers again underlined why it is important to do this kind of research internationally. Innovative approaches could help tackle the complexity of the question, e.g. Artificial Intelligence can help researchers analyze datasets for correlations that are hard to find by a human brain. But for an algorithm to have an advantage, bigger datasets are necessary. There is more information to draw from, more knowledge and more lessons to be learned. This was also the conclusion of the Dutch innovation mission Data & Health last November.
The Dutch embassy in Paris would like to continue its efforts in setting up this kind of joint international research. Are you engaged in research on Long Covid or innovation research methods (such as research through Artificial Intelligence), please let us know!
- 220317_-_dp_covid_long__mars_2022.pdf (solidarites-sante.gouv.fr)
- Mieux comprendre et prendre en charge le Covid long | Gouvernement.fr
- Successful Innovation Mission: French-Netherlands collaboration on Data & Health in the framework of Long COVID – Blog innovatie en infrastructuur (nost-france.org)