Wearables for the follow-up of epilepsy
Description
Inclusion of connected devices in medical staff supporting epilepsy patients: Sharing practices.
Activity C4 held online on November 18 2021, 16:15 to 17:15.
Facilitated by Sheizeen Bakridan and Isabelle Estournet Djehizian from Aura.
Video
To be released.
Notes
Also watch the visual board on the dedicated webpage.
Most researchers answering to the form said they did not use wearables, detailing it with no use, or risk for privacy, and when using it for project management
We wanted to know when a wearable could be used both in prevention, prediction, traitement
Would you recommend to patient : 2 yes, 3 maybe, 1 not usable
Difficulties : question about fiability and price
Relationship between patients and physicians - a risk to reinforce technology over care
Three challenges : data, fiability and price, technology vs care
Shaizeen, designer contributing to Aura
Isabelle, an administrator of Aura interested in data science
Patrick, chair of epilepsy france
Emmanuelle, admin of a patient association for a rare disease, STB, where 90% of the patient do epilepsy crise, biologist
Emmanuel, teacher researcher in psychology in Grenoble
Aura as a collaborative patch to detect epilepsy
Patrick say there are different wearables, patients are not very concerned about private data, in general they care more about false positive, fiability, etc - and a part of the cost which in France may not be covered by the insurance - he tested epicenter in Belgium, a string on the head with sensors near the hear and forehead, he tested a muse adapted device that is very visible and asks questions - not tested others as it does not correspond son the form of epilepsy
Emmanuelle - for those interested there are many options, families or patients are lost - the first object seemed interesting but now there is much choices and there is a need to re legitimate such objects,
Isabelle - we try to be clear about what the patch can cover as types of epilepsy
Shaizeen - is it the patient or the medical care professional who searches for the patch, also the question of trust
Patrick - a validation by hospitals would help, now we buy this like nutritional complements, there is few studies beyond the one done by industrials, a lack of objectivity, with a medical device label, the acceptation will change
Isabelle - this may be the case in having ethics committee
Emmanuel - yes we started early, it can help, and patient association should also be involved so that they can also recommend it to other patients
Patrick - yes on our social networks such question comme 3-4 times a day, especially how to detect crises, how to reinsure the working team, it can come from employers too, not sure that such questions would be addressed to physicians
Emmanuelle - a challenge of vulgarisation, visibility, to make it accessible
Fabio - is the open-source part impactful?
Patrick - in the start i did not know it was an association, sometimes we saw industries doing almost wrong advertising, having a structure that is not for profit, that aims to exchange and put the patient at the core can reinsure a lot
Emmanuelle - as we also are an association, this gave us an impression of legitimacy
Patrick - there were other industry projects that were discontinued, or just aimed to get funding to achieve other goals, for example I saw someone use a wearable that was not at all adapted to their need, so if i understand the need to generate revenue, but there is a certain carefulness
Isabelle - i see a congruence between the limited interest of the physicians and the lack of recommendations
Patrick - the medical environment is not especially a space for geeks, maybe it will change with new generation - today specialists of epilepsy are far from 30 years old - certain can of course support to convince other
Emmanuel - do we know the difficulties seen by physicians ?
Emmanuelle - physicians are more going towards pharma than prevention
Patrick - there is also the idea that the device will provide information and they will have to rely on this - in France the computerization of medical care is very bad - it is common to see daily bugs in IT hospitals, and caregivers can see this as a loss of time
Isabelle - we can also observe that in patients, some are not at ease with IT, some don’t want to be controlled, to get visible input of their disease- so we started with patients and we saw we needed to move the discussion between the patient and the doctor -these are different challenges we need to guide in the project
Patrick - someone came to present a device during a discussion group and people were quite willing to test it, there was an introduction about the device, etc - the difference is that the gain for the patient is much bigger than for the physician : being able to drive, to have a certain job, etc.
Emmanuelle - patient associations are very key to connect to the patients
Isabelle - is there a Swiss association ?
Patrick - Yes
Patrick - we know some foreing patients but not work usually with other patient associations - for now we cover more the french-speaking part
Emmanuelle - i live in switzerland but am a member of the french one, as switzerland is not very active given the different languages
Emmanuelle - the only bit association in switzerland it proraris which regroups rare diseases
Patrick - like the alliance or rare diseases in france - someone who has a son with a very rare form of epilepsy is following a lot of international activities
Sheizeen - did you get feedback from physicians in other domains, cardiology, diabetes
Patrick - not on our side - for epicenter it is a kind of epilepsy which is not very strong but not easy to detect - having a portable device to get the biological information vs self-awareness can be interesting for example to identify moments that the person did not see or remember - such as the neuronot - hospitals could also provide devices to patients- of course it is not the best time to do - there is also a common association to connect to all
When would the Aura patch be available ?
Isabelle - the approach on adherence is blocked because of covid so we do mostly one-to-one - there is also a dimension we should remember, with the spreading of hardware - we found funding for studies, IA, including in open-science and we found there are few funding for project in open hardware - this will be a major topic for next year - we are following all open calls, we already got some - all calls have an aim such as open-science, medical, technology and we answer transparently with the different approaches - everytime we presented hardware it was not founded
Patrick - i thought about foundations like Orange that will fund a project about epilepsy,which was involved in autism for a long time, or EEDF - ideally the proposal should be carried by an employee
Isabelle - it also requires time for the different steps, we know we will need large funds, and projects take at least 3 years, i hope to have a more precise answer at the end of 2021 - we also want it to be international - and we need to see whether there are disparities among countries
Patrick - english associations often have specific budget which are much bigger than french funds, for example in the USA by the epilepsy foundation - funded by pharma
Isabelle - we will then create clusters in different countries - how do you see the question of adherence
Emmanuel - we check the elements of acceptability, before the technology is used - then there are the questions of representation: family environment, control, etc. - and acceptance about using the tech- and then support and guidance - and now we are at a very early stage
Patrick L - we should not reproduce bad methodologies in doing research on wearables: limited patients, not in real conditions, not evaluated in acceptability - being an association can ensure we continue to work on the project - for example the neuronot has been abandoned a bit when the startup developed another project
Emmanuel - ambient assisted living funded many projects but nothing has been coming from it - there is an article about sensors of fall- most did not go into industrialisation, with no cooperation - a lack of collaboration with patients