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ELECTOR - eHealth in rheumatology. Patients with rheumatoid arthritis acquire sustainable skills for home monitoring
Marie Skougaard
Friday, Feb. 1, 2019 · 4:27 p.m. · 23m 22s
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thank you for the introduction and thank you for the in my eh
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we're giving this a presentation uh um i hadn't it initial fought
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eh i'm coming here i was cracked optimistic going on
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the plane coming here as an at developer
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to give an presentation of how we develop an ad
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where we want all patients to do something
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and so all i have it all these great presentations on
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new technologies and digital solutions and i'm right that s.
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i've heard how many patients use their interest in apps overtime and how quickly that wouldn't
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so i'd shane insists that's optic uh pets doing this day
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i what uh they like to focus the the first part well
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it's the same of course the same powerpoint but um
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i would like to uh uh first start off with the selling about how we developed this solution
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uh elect a is a project that i it was initiated in two thousand and fifty
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when we received funds through uh it the horizons twenty twenty
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program of the european union and um and um
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they coordinating team is situated in cool actually it's a
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part of it the copenhagen university hospital be sold
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we only we don't have that many universities and then mike eh and that one is situated the capsule soul
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these are my disclosures right i would say i have none i'm a medical
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doctor and i'm in this a mostly because some of my patients
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i can't they say
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if my uh collaborators so my partners of this project
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have any disclosures boat because they were gathered
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and constitute it it based on the expertise eh and is a collection of eh
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a private partners eh for the developing in these different it devices we have
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and eh university partners eh and clinical sites
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we have our clinical sites in arcs for uh and the in prague in copenhagen
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so the project idea was to develop integrate evaluate implemented and
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disseminate and evil solution monitoring patients with rheumatoid arthritis
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and that's quite easy says am but doing the
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last couple of use we discovered something different
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and i paying and it had been set it for today that one of
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the big challenges of uh developing things like this is that implementing implementing
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and you solution into an existing health care system
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you need a lot of doctors nurses
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and they are not always quite fond of new solutions i can say that for myself that every time
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and u. i. c. solution comma by that i had to learn it kind of distraught disrupt my
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normal way of working so i really think that if uh if we would like to
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develop these new solutions we have to integrate
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our end uses in the development process
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to uh get a quick overview of a dissolution
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we have been um unfortunately i couldn't it showed you the
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real solution because of regulations but i had this drawing
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in uh in that's out we get to see the occasion web client as we call it and they
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at patients own home they had that laptop most of them that we have some problems
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in the tech report like and um and that's there is some difficulties that
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this uh project also have to face that in euro they're a very different
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populations uh across across the country lines um
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what you can see up here the little
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yeah line drawing is a device that in patients on whole
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might develop to mess sure this c. reactive protein
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in order to patients them self assess that that's twenty
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eight zero p. a. and there by processing data
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to that doctor through this secret a web server
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to manager that the season the disease activity
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and um oh sorry there is this the a central at man that it's
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replace that due to safety and because uh it's not always
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that the local desktop that men do you have
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the needed approval for viewing the different uh is monitoring that these patients need it
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and so we have our database collecting all data from from it so we think that the um
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by implementing this in the healthcare systems that it could
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make the make the way from the patients to the doctors so to
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that doctors a smaller and thereby improve the connectivity and commute communication
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it was set up that the nurses so use a on him
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in the outpatient clinic are available at all times for the patients to call in
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as a as you can't say a on a chat on a video chat so you have them face to face
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i am
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and a and i could only talk for ten mike because that's where i'm
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a medical doctor about the in then mike all healthcare is for free
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and a with with all the new technology and all
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the new medicines eh arriving it's eh it's at
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system that's quite pressed by on it's a common economy
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yeah yeah um and that by we we think this could also in many ways improve the resources used
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and also in a way to see the patients that i
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need of care and maybe he sins that i mean
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stable deceased or they may not need to go to our case into the next
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so um we have these objects is through a piece couple of years to develop
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we have to test uh not just document the feasibility and implement this imminent and commissions
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i will talk which much of the free press once a um
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i will come to the fourth one as well but um
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yep haven't made it that far yet um but we have been done some thoughts on
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what i saying about
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including patients when developing these the these types of solutions
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is that when we started we started already in two files an unforeseen
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eh eh where i'd viewing the two first non
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recruited two hundred patients for this project
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and so we started and and this uh this was the joints
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score that they had to fill in at the first solution
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and um
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i would say
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that it was quite easy
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to feel the same but my patient in the green
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a um and and actually as central belief of this project is that
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i'm not an expert in being a patient i might be a
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medical doctor i'm not even i'm mythology so i can't it
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brag about being a expert in that but i would say that the only once
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that are experts in this way is okay since because they are
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the only ones having the disease so all as and and
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use a i thought it would be really important to include them
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and this is what is started by our our programmer
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down there and this it resulted in this and it may seem simple as simple development
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but um what i i haven't fought off or what the consortium
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haven't for off was that the patients will have fridays
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you'll have trouble with that hand sometimes we know that somehow disables some have pain in
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their hands so what they said to me was that in the first one
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they have to tap too many times
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on on the eye patch of what they used and it's simply for the thinkers
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and it seems it seems obvious
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but we just haven't thought of it and um and in that way we um
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decided to go through the entire process of everything developed through the process
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to test it with patients all the end users that could also be the healthcare professionals because
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fruit as you saw before they're all report also this
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platforms the as the healthcare professionals should use
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yeah yeah another example is say if you see that painting it
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of a of a patient it's the patients uh using uh the i think the
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needle prick or of fingerprint need a low what you would call it
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him and i don't know how many of you see a problem with that picture
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not you well i thought there would be no problem either but i can't pay
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since i it's it's from it in instruction manual that we may it's
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fall this exact test that patients have to you have
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to show us that that they could use the
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point of cat device so that that they could miss your at home know on c. l. p.
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so i had thought i think i port of five hundred of these eh
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fingernail pretty uh something that triggers i am and men and my patients came and
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said well marie i can hold it hold it because it's too small
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and so i can we have to go back to the workstations to do the entire picnic again
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and we have done that a lot of times a a and
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we have been talking to the healthcare professionals with a designer
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because we saw that probably it would be best to include a designer as well and um
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and as you can see for that's one of the diaries i got from
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one of my patients when they got these says solution back home
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they were asked to fill in diaries of things that
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they experienced at home and that could be will the devices
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to be my internet doesn't work things like that
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so what could ruin this project of uh developing monitoring vocations
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well if you want patients to assess their own joints they have to and you have they have
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to be reliable and they have to be in agreement with what what day we doctors do
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then um luckily we had some
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thought of what they resort would be because something like this has been done before
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but not in an email setting and so we included a one hundred and
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eighty eight i don't know why is this he said that um
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and they reliability was excellent uh saying that at at
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this if you see the one i am
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on their um we defined it has excellent if i. c. c. was above
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all points he free
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but but what we also saw was so that
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the minimal detectable change was one point thirteen
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and it in our protocol we define that it's
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we would like to see a minimal detectable trace it chains of maximum
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of two point six because that is the you last recommendation
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fall when to start thinking of changing street men but do something with each
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treatment if there is a change the best twenty eight c. r. p.
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um and and this meant to us that we should consider with their whole monitoring
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was able to see these chains it's that we want to treat after
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so all we couldn't have that pace in went to their own home
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to assess their own chimes experience
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what you say i fly yeah in that to cease which will not this coverage by the whole remote monitoring solution
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so as we did also test the agreements
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we saw that in relation to what is your before that actually patients
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and health care professionals will just as good a justice pat
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at assessing these chimes and we would still say that
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these good or bad assessments done by mythology
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us in outpatient clinics other ones that we treat after so as the agreement was so good
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we have decided that we could move on implementing the solution
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the next step is set a comparison of for the email through the standard care they where
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we want to test the tree to track its strategy through this whole monitoring solution
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um and what both patients and health care professionals can see is
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uh it in c. the platform a picture of it
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they can decide whether they want to follow the disease activity they
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are having the heck assess the c. r. p. and
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rest for both luke both local fancy campaign
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and it says six months but a month to send us
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to the saving place both in oxford prague and copenhagen
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and one for me i don't have the results yet but uh
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maybe some can present them later
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well one thing i fart when i was sitting over there
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i was i was looking at this a really beautiful logo eh that was made for the conference
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and i think we just take a second to look at it is um
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pretty much describe what we want to obtain how we want to obtain come on or something
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and that what i became quite philosophic you say but
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you can see a lot of numbers
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and underneath there is a hand and i think when we want to develop these new
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digital solutions we really have to think about the peace in on the nice
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because if we don't take them into account i don't think that the
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solutions or our solution would see this patient centred would work
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our pace and we'll have the possibility to answer all the question
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you asked that dark score and the biochemistry at home
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and the communication could be performed year this video chat
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and so one of my case in say to me that uh if marie
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if this actually six six seat so you this will change my life
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and he said that because that the every year sees walking they can mean walk
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tries yes sometimes
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and that's independent if for i. friday's is active c. t.
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v. c. doesn't care what a remote only to say
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room authorities say he she wants to what we can you know because
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that gives for another kind of what value than thinking for disease
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but the idea of putting this point of care device in her
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backpack together with a rifle with a giver i completely another
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degree of freedom
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it could might be like the one sitting down there in her garden you you know
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yes if you want to get in touch with all of these are our emails
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ah sorry any questions maybe just to let you know the
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patient behind the numbers here are things maybe it's my
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and i hope i don't have a disease maybe she won't be coloured indoor
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number to push you have any but we never know with which
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yep the low out so it's a landmark study right if you can show this but
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this whole monitoring works and it's good for the patients and their free will them but this is really
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important so part from um technical aspects problems with the
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do you have other problems so do they agree not to come with whether patients who said okay
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no i don't want to take part i prefer to see the patient to see the doctor
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we'll dowels always different patients so oh there are in in
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one on one in these places we think this is
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the world's best time you and there are things that patients that fine
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the freedom and their peace in knowing that their remote biologist
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no sort all takes care of it all so the idea
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for them to go back to do their own monitoring
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certainly fill them with thinking of the disease of thoughts of that these disease
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uh and uh it's it's quite two groups because uh some say that
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well not thinking of disease makes me free but thinking of disease of being a
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big up out of it helps them to prove them wrong patient care
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and it's this matter of h. or affinity to technology you are just uh well i would
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say most people not found out of the this whole monitoring solution is elderly people
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it um but there are so many i would say it's not a matter of of ace
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it's probably a matter of feeling say with this solution so i think that big
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so it would be to healthcare professionals to get correct instruction and good instructions
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because people coming in that are quite unsafe using computers
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i see it's not small with them that you as a kid
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any for the question
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can you comment anything on the on the time frame which is for him to run
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into any issues with like compliance with patients over time if the first study
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yeah i can do that because we started this a this clinical try restart it in two thousand
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and fourteen and i said i recruited a lot of case in maine in these two's months
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but we ran into a problem of both the solution not working
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and the and case and says that because of what
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you can say type monitoring because they had to
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had to answer the questions are coming to the hospital to meet their faces you and
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four times in in two times in one week and then after two month two times in one week
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and that is sometimes quite difficult to do if you have a p. c. everyday life
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but the i i think the the future in the future we have the
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possibility or the patience have the possibilities to fill in the
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question must appear time it's best for them for you
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oh
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well we i i don't think it had been a problem which of patience staying motivated
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because if you motivate them from the beginning they they they kept
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motivated they the problem was if i was talking to them
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mostly because all the oh so they couldn't make it because they had to work or things like that
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and that will maybe i shouldn't trust my patient but i what i tend to do because i know
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the ones who who said that it was probably too true am i so i i think
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to stay motivated it's
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is that way but you had to incorporate them in
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it and i think one of the advantages with
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this is that it's not only unhappy it's also all
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the connection to the hospital um through that
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okay thank you very much so we have to move on sorry can continue after one
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so the coffee break people to a pretty dinner whatever recorded if he saw
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what pleasure noise to calling for that yeah but he uh he would never return
00:23:03
of experience about was additional tools available to train it should be useful
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we want to put the drawings because we made a big mistake we forwarded e. unit bordeaux
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