Lupus: therapeutic education or how to become involved in your disease

Hello Laurent, thank you for agreeing to answer our questions. Can you explain what the Lupus Living Lab is all about?

The particularity of the Lupus Living Lab is its methodology: the project is carried out with patients from start to finish. The objective is for patients to monitor their disease themselves with on-board tools (UV sensor, interface application with the centre, blood samples on the finger, stool sampling...). The patient is educated to manage their disease through devices that our team teaches them to use. To put all this in place, patients reflected with us in small groups.

What is the purpose of this data collected by patients?

The question is whether all these biomarkers are able to predict relapses earlier than usual clinical signs or follow-up markers: the idea is to be able to anticipate a relapse when it is still at an early stage. With the information collected, we can track what has happened, what is happening and what is not happening during an outbreak, at the molecular level or as a result of risk factor exposure behaviours, before the relapse is actually present.

Once collected, how is the data analyzed?

The Lupus Living Lab has the advantage of providing patients with tools to structure the analysis of all biomarkers collected. It provides the methodology. In addition, patients are in constant contact with the centre. All the information is on the table so the risk of having an incorrect analysis is lower. For example, it avoids wrongly incriminating a parameter such as a vaccine, taking an antibiotic or an injection. This exhaustive monitoring with a detailed analysis is interesting for patients because they do not forget any factors.

How does this contribute to the patient's therapeutic education?

A therapeutic education team is involved in the project because it is necessary to educate patients beforehand to inject themselves, to detect certain symptoms... Therapeutic education is major in the management of lupus and will remain so, even with improved treatments. By knowing their disease, patients will be better able to manage it and recognize the symptoms of an outbreak so that they can contact their doctor as soon as possible.

Who is involved in this project?

About thirty patients will be followed for at least 6 months.

Can patients who are not participating in the Lupus Living Lab adopt the same approach?

Of course, it is recommended to monitor yourself, even outside the scope of this project! I advise you to do it in partnership with your doctor, over given periods of time so that it is not too burdensome. In the long term, we would like to extend the Lupus Living Lab method to all patients, with a monitoring at the centre level.

What is the difference between the Lupus Living Lab and a traditional clinical trial?

The methodology of a clinical trial is different, but when we launched this project, industrial partners were interested in this approach. It is conceivable that participants in a clinical trial, between two hospital visits - the visits are often one month apart - will be able to use the same tools as the Lupus Living Lab to report live all the significant events they are experiencing or pharmacovigilance data. The patient is often a little lonely between two visits, despite the link with the centre that is conducting the clinical trial.

In your opinion, what role should the patient have in their care journey or choice of treatments?

The role they want to have. There is no such thing as an unchanging ideal. Some patients, at the beginning of their illness, show a passivity that cannot be blamed on them. Gradually, these patients will often become independent. There are phases when the patient is in need of "medical paternalism", even if this term does not have good press at the moment. Sometimes doctors have to "pamper" them until they get back on their feet. Of course, in the long term, when the disease is stabilized, there is no limit to the knowledge of the pathology that patients may have. Their wishes can be accommodated, sometimes even if they wish to implement a therapeutic interruption.

Discover the rest of our interviews with Laurent Chiche:

- Lupus flare-ups: what are the causes and symptoms? How can they be prevented, recognised and treated?
- Medical research in lupus: towards less toxic treatments and personalised medicine
What do you think of the Lupus Living Lab? What do you lack (or not) to understand your illness on a daily basis?