Then I will tell you a little about HappyHands, which is a project on hand arthritis. My name is Anne Therese Tveter.
I am a senior researcher at Diakonhjemmet Hospital, at a research center for treatment in
rheumatology and musculoskeletal disorders REMEDY and speaks on behalf of us and my colleague Ingvild Kjeken,
professor here and it is the two of us who have worked a lot on this project then. Hand osteoarthritis it is a degenerative
disease that affects approximately half of women and a quarter of all but during their lifetime, important
cause of pain and impaired function in the hands and there is no cure for this disease. We know that
the recommended treatment is information, hand training, use of aids and
support rails, and we know that it improves pain and function.
But the problem with this patient group is that, in the study we have
done, it is only 21 per cent of the patients who were referred to the specialist health service who
had received this type of treatment beforehand and it must then be done in the primary healthcare service. So you must
not into the specialist health service as the first place one seeks help. It is developed
different models for arthrosis treatment, but mainly it is aimed at people who have a hip or
knee osteoarthritis, so these people with hand osteoarthritis end up a bit like you said, they are an undertreated group
end up a bit between two chairs and in a sense do not get the follow-up that we see that they can be useful
of. We have done a lot of projects in this group. We see that some simple measures, namely training
and use aids such as
support rails, that it can be of good use to them and we want to reach out with that in a way. The purpose of it
the project that we sent in that application to Stiftelsen Dam was to improve accessibility
recommended treatment for people with hand osteoarthritis in primary care. And then the first intermediate goal was to
develop a user-friendliness and the second sub-goal was to investigate the usefulness of the content of that app
through then evaluating changes in these disease and health variables. And we have done this in different phases
The first thing was planning, as mentioned, then we contacted USIT to see if they could be responsible
the development of the app, so it was an important contribution when writing an application, of course
you actually have things like that in place and you were positive about that, so we were very happy about that.
Furthermore, we have included some user representatives in this project, and that is important
research project that you have user representatives who can then say what is useful to include in an app.
So we asked them what you need, where they listed a number of things that they saw as useful, namely
about information about hand osteoarthritis, goals, motivation, coping, aids, ergonomics, training and activities,
support rails, osteoarthritis and communication. So we went ahead then with when we then got this award then went
we continue to start digitizing the material that we had based on previous material that we have
and the scientific recommendations that exist. We have made many films
both by user representatives, GPs, rheumatologists, surgeons, occupational therapists, nutritionists, physiotherapists. Small film clips
as we
have put together a treatment plan that lasts over 12 weeks. Here you can see the different types of films.
We have both information on what osteoarthritis is, drug treatment, surgical treatment, exercise, pain,
how to use osteoarthritis, lots of movies. We have made a total of 25 films and now we have made a few more
because we will improve a little based on the pilot study we have done. The next step then when we had in a way
developed all these films, it was to start the development of the app itself, so then we had agreed in advance
when there was an opportunity for USIT to start this here. At least we had tried to prepare as best we could
by making some sketches and setting up setting up in a way how we thought
that this app could look like and then we had some nice conversations in relation to what was possible and what was
not possible within the budget we had. The development of the app was planned so that USIT worked in two
weeks and then we sort of had a meeting afterwards where we looked together at the work that had been done
where we also had user representatives with us from time to time, but where we then sat together with developers and us researchers
and discussed how we could solve various things, whether this looked good or whether we should
make changes, so then we went through something like the picture here, which shows the layout that became
made by USIT with how we thought they could set up, so we could
sort of play into it, and then it then shaped the development the next two weeks were to be worked on
the app. We probably had 5 weeks like that, I think as we worked on it, it's possible there were more
a bit uncertain, I don't remember exactly, but at least we had periods when we worked on this here
and in this app, for us it is important to be able to look at whether to collect this sensitive data, that
was why we also chose USIT because there is an opportunity to collect data, so in this app it has
we then incorporated an online form so that automatic responses are sent into TSD, the service for sensitive data
which we can research further. And the app it looks like this. That's the front page. What we wanted and what the patient
also the desire is that we know that this is a lot
training. The patient must exercise, the recommendation is three times a week and then we will see some information
films to help them understand the disease, but as we all know, it is not always easy
to get trained so what was the aim of that app was to give the patient a reminder. So when
patients start up or download the app and they are asked which days and what time they
want to train, it is something they can change eventually, but they must set a time, and at that time they get
a notification on the phone that there is now an activity in the HappyHands app. And it is to remind them
on that. Not that you have to train at that exact moment, but to try to remind and remember to train. So when they do
press that notification and they will enter this front page and then you can see that there is someone like that
dashed
Then you see the three days that have been set up with training. Here on Monday, Wednesday and Friday, you see one then
dashed line around which shows that this Monday training is now ready. And then they go into it
it opens up the exercises like when we filmed. If they then click on the first film here which was the warm-up then
can they then watch this film and do the exercise. And when they then press done, it is registered in
an online form so we can see how many of the exercises the patients have done, so we can follow up on something
which is important for us to follow up to what extent they are able to do the training they are supposed to. This was
after all, part of the aim of the app is to try to get the patients to actually exercise, because we know we have one
effect. Then after that they have trained all the exercises for
On that day, they are then asked about the degree of pain and stiffness in their hands. And this is partially stored in
the app and sent in to TSD and then it is also partly saved in the app so that they can follow
involved in its own development. Then you can also click on the training tab at the bottom here where they can also
in a way track even how many sessions they have done. And this has been a bit compared to those who are going to change habits
and something like that. We have tried to plan for the patients to make this a habit of doing the same
the way you brush your teeth or something like that, that we have tried to motivate them, so then we have prizes, gold
silver and bronze in relation to how many days they train and we have also made the team
feedback which is then sent at the end of the week
also that in relation to how many sessions they carried out so that they should feel that this is a somewhat personal one, that
you feel that they are being followed up personally, even if this is through an app. And so it is
added information films, somewhat in the same way you go in and watch the films, look at the individual
movie, press finished watch and we get information about whether they have watched or not, and all these movies are saved
also saw in a separate tab in the app that allows them to watch the films as often as they want. In addition
then we have made some quizzes. After each week, when they have seen the films, they can answer
a quiz and it's to try to get them to remember the most important things in the app. It is not something we collect
into whether they answer correctly or not, because they can actually answer that way
times they want, they get it right in the end, but it's more to make them remember what is
important for them this week. Then we also have the collection of data, so those we answer a question when they
start the app and they also answer monthly questions about pain and function that is
important elements and which are often weakened in this patient group. They get a lot
pain and they get reduced function in their hands, so we collect data on that to look at change and
it is then also saved in the phone so that the patient can follow up and see their change themselves. Then you can
it goes into graphs, here you can see in relation to pain and stiffness where they can follow up
their own development during the two weeks.
Here they can see how many sessions they have trained. We have now done a test of this app
where we have recruited patients from the Norwegian Rheumatism Association, from the outpatient clinic here at Diakonhjemmet and from a
medical center they have then answered questionnaires that I sent out via an online form and we have tested grip strength
and we have collected user data from the app, i.e. how much they have trained and
questions they have answered there, and we have also conducted some focus group interviews. They have used the app for 12 weeks and responded again in
afterwards. We are now in the final stages of this, we are collecting the final data now. Preliminary results,
we included 73 patients. This is a disease that often
they affect slightly older patients, here the average age was 64 years. What can be said here it was that
one of the feedbacks we received in the assessment from Stiftelsen Dam was about this
the group use apps and I don't think that's a problem. Here we have a fairly high average age
and everyone has reported that it has gone very well. There is a majority of women and that's right
the distribution is when it comes to hand osteoarthritis, and half had
pain from both hands. We have gone in and looked at this user data and this was one
training plan they were to train 3 times a week for 12 weeks. They could train up to 36 sessions and whatnot
we think it's incredibly funny to see that the median here was that they had trained in
32 of 36 sessions. It is rare that we see such good compliance with training in any of those projects
we do, as a rule it tends to fade away very gradually, but 75%
of the participants have been training for over 9 weeks, so these are very good results and make us who we are
super satisfied with what an app can add to this patient group. We get the information films
preliminary data when they have seen all the films for
a week and that they have answered the quiz, so the median is that they have done it for 9 of the 12 weeks,
but I think there are a lot more people who have seen more films than that, at least that's what we got
reported back
on the interviews we have done, but that is the data we can extract. We have looked at it with pain and
here we see that they have reduced their pain by 1.3 points in rest and 2 points in activity and
this is at group level so these are very good results. Changing pain
at group level with 2 points, we should be very happy with that. When it comes to hand strength,
grip strength, then they have a group-level change of 3.2 kg on the right hand and 3.6 kg on the left hand and that is
also a fairly large improvement that corresponds to what had been done in other more randomized studies. There can
I also say that
is someone who has had an absolutely formidable improvement. We have tested these patients and
especially those who have had very poor strength. There were a couple of patients who had a grip strength of 8 kg
which is quite low. There was not much strength in the hands when you manage to squeeze together only with 8 kg and
after the 12 weeks of training they managed 27 kg, now of course there are some individual examples, but for those
the people, this has been of enormous importance, because it allows you to start being able to open screw caps
on jam jars and you have a completely different strength to manage
the various activities of daily life. Obviously, this, as I said at the beginning, this is a group that has a
quite a bit of a bad offer in the first place then
there is a group of patients who were very motivated to exercise at the forefront. The large proportion which
in fact, so much of the training has been completed that this may be due to some of this, but it is the case
only good that they are well motivated for training. What we also see is that this is a group that continues to have
a high motivation for training also afterwards and they were very satisfied with the app and think that it was a
very great benefit of using this app. We have today conducted focus group interviews with many of
these patients. We have requested things that we can improve it
It is clear that they have come up with little things that we will try to change a little, but you have everything
the patient has been super satisfied, especially they have been satisfied with they get these reminders that
makes them actually remember to exercise. We had a man come and say he thinks
that this, or he thought that this was an app for 80, 90 year old ladies, but he had
very problems with their hands. He couldn't bring his fingers together, he couldn't get them together
each other, so it was difficult to pick things up from the table or the floor. He struggled along
to get the feature working in his hands and he was going to give it a go and after 2 weeks then
he managed to get his fingers together and then he started training even more and he
managed to increase his strength even though he is a very strong man. He is completely saved and training
actually now every day so then we have in a way achieved what we wanted too, that we are going to
should make them get this as a routine. Many of the patients have said it is when
when the follow-up comes, we want a version 2.0 of HappyHands, that it is also followed up
after the 12 weeks, that they can still get reminders, that they can continue training, can watch movies
if they want, but that they get these reminders to train further. We will try to make it happen
Also, overall, the patient has been super happy with this app. We have followed up very well
and we also see from the data that we collect that we have had an improvement. So it is clear that now everyone has
used the app together, so we can't strictly say anything about the effect, but we've now got a new one
allocation
on the same app, so we are going to start a randomized controlled study where one group will go on
app the other group should only receive the treatment they are then prescribed for, that can only be
that they get an information letter or that they don't really get very much at all, only then can they
we are looking at the effect of this app and we are very much looking forward to getting started, but first we have to
just make some adjustments to this app so that we can make it even better. So I want to thank you
special thanks to USIT for developing this together with us. We think it's been incredibly fun. We
have learned a lot about UX and programming and everything, it has been very educational for us.
We've had great fun, something completely different from what we usually do in our everyday research, so there's that
was great fun. If there are any questions, I would be very happy to answer them.
Thank you very, very much. Do you envision this becoming a clinical tool? We really want this to become one
such a register for us that, we should be able to collect data on patients with hand osteoarthritis so that we can
actually get this out to the entire population of Norway and be able to follow them up to see that this is paying off
the improvement we hope it will bring.
Do you intend to apply to have a register created? In the long term, we have a goal for that, I know that the road to get there is long.
It is, but for the time being we are going to carry out a randomized controlled trial, so it will take time, isn't it
quite yet, but our hairy goal in the future is to be able to use this app to actually follow
patients with hand osteoarthritis over time. We have been in discussion about
other new registers and we have been clear that we can offer infrastructure for registers.
I have stopped most of the registers, at least I did for a while, I think so
is a little way to go, but we'll see
this here as a unique opportunity. Documenting how it
walks with patients it is important, so this is a unique opportunity for us to also collect then
this data through the app, it is also a very nice opportunity for the patient to get the treatment
should also they also have the opportunity to follow their own development which enables us to go
back to, for example, the GP and say that now I have tried. This doesn't work no matter what
use it as an opportunity to be referred on to the specialist health service or you can say you know what this
works great, I manage with this. I think about the data that you collect. You wrote a bit about user data, what is it?
No, it's actually the data that describes how much they use the app. And how do you collect it?
When they then say that we have now carried out a training exercise, it is registered
also via online forms. So that we get it in and for our research it is important to show that this
is such a dose ratio, i.e. the more you train, the better you get. It is an important discovery if we can
show that those who improve the most are also those who train the most. It is important for us to
could say something about how to train further. We really know very little about this patient group
the fact that we have said 3 times a week is based on general training guidelines that you should train
3 times a week, but we don't know how much is needed and we think that this app can actually do it
contribute to us being able to say something more about it.
We are often asked if it is possible to get more advanced log data in relation to the use of
mobile apps, and then we reply, sorry, it is not allowed to use that type of tool in our mobile apps, but all data that goes
out of the mobile app goes to the online form, so that means that if you are going to have that type of usage data, you have to define it
as a form, then there will be separate csv files, but then we will come to something we will talk more about later today
and which we will talk about on both Monday and Tuesday, is that you get a whole bunch of csv files.
I don't think we have helped you in TSD. How have you been in control of and working with your data?
We are used to working with Stata and organizing and analyzing files so it goes quite smoothly, but I have set up
some syntax so that when new data comes in, you can only run DO files in Stata
which means that you collect what has come in and get it organized by patient.
When the patients log in, they enter their ID, they get an ID number and this is included in all these online forms
this also contains the ID number that the patient has, so we can therefore connect all these online forms
which is in the TSD and easily get it up to date on how everything is for a patient.
Yes, because the mobile app delivers it every time there is data with the same ID.
So it is clear that exactly that in relation to user data, the fact that they have to press that it has been completed,
it is a golden opportunity for the patients to deceive us. It is, but I don't actually think they've done it here
because now we've interviewed them so they've sort of been very trusting and they've reported
when they have trained and not otherwise. And we have it so that if you have set up Monday, Wednesday, Friday
and if you don't get to train on Monday or Tuesday, the training closes. Then you move on, then Wednesday started
so then it's not trained, so I don't think they've tricked us much really. There is a possibility then,
but I actually think they don't. They submit what they have done simply.
I think generally speaking in research, our experience is that you have little experience of people lying.
Besides when you ask people how much they exercise in questionnaires. That's usually not the case. We think we exercise a lot, but we really don't.
That's why it's nice to collect that type of data as well, because it allows us to get a picture of how much they simply train.
Which we can use into our analyses, so we're very excited now to start looking at the analysis work and looking at this.
So we have a question here. How long did the entire development process take from start to use of the app?
And then very exciting exclamation mark exclamation mark.
We received funding in February 2020. We had to spend some time before that writing an application and talking to you
and talk to a cinematographer and something like that, but we got funding in 2020, then we'll start up in autumn 2020
with filming. We start in June 2021 with the development of the app and began testing at the end of November 2021.
We have recruited patients and have followed them for 3 months, so we are now done around this time with the last three months of testing.
We're actually done now. We will only collect the latest data on them. There were some laggards, so they are lagging a little behind.
All in all, we had set aside two years for this, and it has in a way passed before we have an app that we can use.
Now we will start with a proper research project. This was a pilot study of what we have done now,
now we are going to start with a randomized controlled study that allows us to look at the effect.
Two years have passed since then, but the development with you has certainly been quite rapid, because it was from June to November,
before we had a version that we could start a pilot study on.
So we had set aside what we are going to do now this summer, is to make some small changes based on what the patient has reported in,
and things we have seen. It is more likely that we have forgotten some things that we must bring in.
and some words that they have not understood in our questions. It is very nice to have a pilot study
before you start a slightly larger study, you will have to remove some of them, there may be a bug in the app
or there may be things that we haven't thought of or that haven't been fully in place yet.
Thank you very, very much.