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2021-12-04T20:58:03Z

Notes

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	== Notes ==		== Notes ==
	~~Go to~~ the [https://web-aura.wixsite.com/atelier-openvillage?lang=en dedicated webpage].		Also watch the visual board on the [https://web-aura.wixsite.com/atelier-openvillage?lang=en 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

			https://www.epi.ch/fr/

			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

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2021-12-04T20:52:42Z

Description

← Older revision		Revision as of 22:52, 4 December 2021
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	Facilitated by Sheizeen Bakridan and Isabelle Estournet Djehizian from [[Aura]].		Facilitated by Sheizeen Bakridan and Isabelle Estournet Djehizian from [[Aura]].

			== Video ==
			To be released.

	== Notes ==		== Notes ==
	Go to the [https://web-aura.wixsite.com/atelier-openvillage?lang=en dedicated webpage].		Go to the [https://web-aura.wixsite.com/atelier-openvillage?lang=en dedicated webpage].

Hoc at 20:42, 4 December 2021

2021-12-04T20:42:28Z

← Older revision		Revision as of 22:42, 4 December 2021
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	Inclusion of connected devices in medical staff supporting epilepsy patients: Sharing practices.		Inclusion of connected devices in medical staff supporting epilepsy patients: Sharing practices.

	Activity C4 held online on November 16 2021, 16:15 to 17:15.		Activity C4 held online on November 18 2021, 16:15 to 17:15.

	Facilitated by Sheizeen Bakridan and Isabelle Estournet Djehizian from [[Aura]].		Facilitated by Sheizeen Bakridan and Isabelle Estournet Djehizian from [[Aura]].

Hoc: Created page with "== Description == Inclusion of connected devices in medical staff supporting epilepsy patients: Sharing practices. Activity C4 held online on November 16 2021, 16:15 to 17:15. Facilitated by Sheizeen Bakridan and Isabelle Estournet Djehizian from Aura. == Notes == Go to the [https://web-aura.wixsite.com/atelier-openvillage?lang=en dedicated webpage]."

2021-12-04T20:17:37Z

Created page with "== Description == Inclusion of connected devices in medical staff supporting epilepsy patients: Sharing practices. Activity C4 held online on November 16 2021, 16:15 to 17:15. Facilitated by Sheizeen Bakridan and Isabelle Estournet Djehizian from Aura. == Notes == Go to the [https://web-aura.wixsite.com/atelier-openvillage?lang=en dedicated webpage]."

New page

== Description ==
Inclusion of connected devices in medical staff supporting epilepsy patients: Sharing practices.

Activity C4 held online on November 16 2021, 16:15 to 17:15.

Facilitated by Sheizeen Bakridan and Isabelle Estournet Djehizian from [[Aura]].

== Notes ==
Go to the [https://web-aura.wixsite.com/atelier-openvillage?lang=en dedicated webpage].

Wearables for the follow-up of epilepsy - Revision history

Hoc: /* Notes */

Hoc: /* Description */

Hoc at 20:42, 4 December 2021