eCOA and Older Users

June 14, 2017

FULL TRANSCRIPT 

Speaker: Katie Garner, CRF Health

MODERATOR

I’m going to introduce Katie Garner, Katie’s over here. She’s the only person I know that drives an electric car, so I think that needs to be applauded firstly.

Katie will be talking to us about the use of eCOA and older users. But this is an important area for us because of course we all experience the older, or the people who might be perceived as older, and the challenges that they might face. So Katie’s going to describe that to us.

Katie comes to us with a huge amount of experience previously working at a regulator, the MHRA—ooh scary—the NHS, and currently acts as the head of therapeutic area advisor at CRF. So Katie.

KATIE GARNER

So yeah, I’m Katie Garner. I’m the Advisor for Therapeutic Areas at CRF Health, and we’re going to be talking about eCOA and older users. We know that eCOA is a widely accepted method of data collection in trials, but sponsors particularly sometimes ask us how older users manage and whether they’re capable. And we feel that they are. What I’ve been doing the last few months is really gathering some hard data and information, speaking to people one-to-one and hearing people’s experiences from the horse’s mouth, really, so that’s what I’m here to tell you about.

But populations that we generally find can have challenges with eCOA are patients with psychiatric disorders, with cognitive impairment, with dexterity issues, with visual or aural impairment, paediatric patients, and also geriatric patients. And it’s the geriatrics that we’re going to be discussing. What I’ll cover is my expert network project, the network plans, older users, and then the findings from that piece of research, and the conclusions and the next steps.

So we had a good think at CRF Health about the people and populations that we have unanswered questions about. We’ve done lots of studies and we collect lots of experience and lots of understanding as we go along, but there are still some things that we don’t know the answers to, and we make assumptions, make best guesses, but to really get those questions answered is of huge benefit to our product development and also to our delivery projects. So I developed some network plans for the therapeutic areas that we identified as being important. And then did research and contacted charities, support groups, clinicians, and national and local organizations, and also patient advocates where possible, although patient advocates seem just to be interesting in the things they’re interested in. And we focused so far on diabetes, oncology, paediatric, and older people. And in those indications, we’ve done the research and interviewed people and also asked the people that have been interviewed to become members of an expert network that we can call on when we need them for advice or input.

A definition of old people is actually anybody over 55. And I think that’s young, I don’t think that’s old at all. So that’s quite shocking really. Hands up if you’re an older person. It doesn’t seem that far away.

Older people are really important in their eCOA, because the population is aging so there are more people in clinical trials, but also older people have more complications, so they're going to be in trials more naturally. We’re all going to get there, and I read a figure—unfortunately I can’t remember what the figure was—about how much of the population will be over 75 by 2020, but we know that the aging population is kind of skewed towards the older generation. And there’s going to be more eCOA as well, so more older people and more eCOA, more older people in eCOA. And research is really helpful to support our view that older people are capable of using eCOA. But then to identify any potential challenges there are, any opportunities to identify the best practice for this group. And as we find when developing best practices, they’re not usually just applicable to the one group, but are kind of applicable generally and improve things for everybody.

[04:55]

So I’ll just go back. Actually the first thing I did was I found a local group near where I live of over 55s. And I went to talk to them about what we do at CRF Health and eCOA. And I asked them whether they would be prepared to talk to me one-to-one and give me their experiences. And I thought that would be a nice friendly experience, talking to this group, but it wasn’t. This group were—although it was supposed to be over 55s, they were definitely older. And a lot of them just were not interested. So that was my first finding. The older the group of people, the less engaged they are. And that’s a generalization, but some of them you know, were quite straight with what they want to tell you about, I haven’t got a clue what you’re saying, I don’t know what you’re talking about, you know, quite kind of dismissive and not very friendly. So that was one finding.

So the older groups, the older people I think are to be found at the kind of over-55 groups. But the younger older people who are more comfortable with eCOA for research purposes, they’re at WI, they’re at the golf course, you know, they’re in other places. So the first group I talked to probably wasn't representative. So after I had some victims, a set of research objectives were designed. And they were primarily designed to support our trial consent project and looking at how older people might manage with trial consent, remote consenting. But actually the findings are relevant across all of eCOA.

So the objectives were to look at, if there was any prior reluctance to using electronic and touchscreen media, to look at how one-to-one consultations might be undertaken effectively, and then also what formal aspects of the learning experience tend to make the process easier or more difficult. The interviewees were also first asked about their sight, their hearing, and their dexterity, and that helped put the answers into context and assess how much of a barrier these challenges are. And one of the interviewees when asked about his hearing said his hearing was fine unless it was his wife that was talking. Cheeky.

So I spoke to ten people. They were between the ages of 65 and 83. Six female, four male. And there were a standard set of questions followed in the three sections of the research objectives. And the interviews took between 30 minutes and an hour. Actually one of them took an hour and forty because there were lots of other interesting things that came up as we were talking and then we didn’t really limit those interviews.

So in terms of the general health, all ten of the subjects wore glasses, so that is the biggest challenge for the sight, that we really found was people’s issue. Seven out of ten said their hearing was fine. Three out of ten reported some problems with hearing, but they weren’t necessarily the oldest people, they were aged 71, 73, and 83. One specifically cited problems with the lower tones of sound, and I think that’s, if we looked into it a little bit more, we might find that’s the first end of the spectrum to go, so if we try and avoid the lower ends of sounds then that’s going to be helpful. Nine out of ten said that dexterity was fine. One out of ten cited dexterity problems due to a previously broken arm and nerve damage. Nine out of ten said their concentration was fine, and one said that they did have trouble with their concentration but it was probably due to their personality, which may be just gone off a little bit with age but it was just down to them. And two had previously been involved in clinical trials, one for statin and one for insulin. So if we had to prioritize which challenges to tackle, we would, on this information go for sight.

And the subjects also reported type 2 diabetes, dyslexia, age-related macular degeneration, and sight in only one eye. So if we found we wanted to go back and interview people on another topic we could go and talk to perhaps see what sort of challenges dyslexics have and what problems diabetics particularly face in eCOA. One subject was a midwife, still working as a midwife, and the others were previously engineers, lecturers, librarian, fireman, hairdresser, photographer, and a rock and roll band member. He said he didn’t have any problems with his hearing despite the fact that he’d been a rock and roll star. He has got concentration problems, yeah. That might be due to previous interferences as well. I know this person so I’m not just making assumptions. But all very interestingly reflected their previous experiences and their personalities in their answers. So you know, the engineer was talking about processes and systems. The midwife was talking about how she would find these experiences as a clinician not just as a patient. So it was interesting to see all of those differences.

[10:37]

And here are the results, not to all of the questions, but some of the very topical ones. Based on age, the younger ones to the left  and the older ones to the right. So you can see that the older ones, three older ones had feature phones, so that’s the push-button phone, you know, the kind of old-fashioned ones. Smartphones, seven out of ten old people have a smartphone. So that was quite surprising, I thought that it would be more balanced. But it is the younger ones and then you have the kind of three older down there, they were still on feature phones. Seven out of ten were using tablets. And five out of ten said they enjoyed using touchscreen devices. Two of them said that they neither enjoyed it or didn’t enjoy it, it was just something that they did. And one of them said that they absolutely did not enjoy using touchscreen devices.

So we found that all of the subjects had problems with their sight and needed glasses for reading. But when asked if they had problems seeing and reading on mobile phones or tablets, they all said no it was very easy. So the problem with their sight had already been solved with the glasses. So looking at this, that actually isn’t too much of a challenge. And actually a lot of them knew how to pinch the screen and enlarge the text when they needed to. In terms of pressing the buttons, they found that easy as well apart from one who said it wasn’t easy. And there was a second part to that question. How easy do you find it to press buttons and know where to go. So in hindsight it would have been nice to separate those questions out because a couple of people said pressing the buttons is easy but knowing where to go isn’t so easy. So in terms of more research, and perhaps looking at improving our product, maybe the signposts and the instructions and knowing where to go would be helpful to look at that again.

I asked if they had ever been given an electronic device by a doctor and they all said no. But when I asked if they had been given a medical device by a doctor, all but one said yes. So they’d all been given blood glucose meter or more commonly a blood pressure monitor. And they all found these really easy to use. And really in terms of pressing the buttons, although we had not been using electronic devices like smartphones, they had been using devices.

And again, another surprise. Experience of remote consultations. So all but one had had a telephone conversation with a doctor and found it to be really useful. So we were asking these questions to see how acceptable remote consultations would be and trial consent would be in a clinical trial. So in a healthcare setting they were all very comfortable with it and very positive because it saved them time, it saved them going out and it had been the best use of everybody’s time. But that was more for ongoing issues, not for diagnosis. They all had knowledge of Skype, so if we were looking for a channel for having remote consultations in clinical trials and remote consenting, Skype was very familiar to them. All the brands are available. They were all prepared to use Skype in a healthcare setting, apart from one who said they wouldn’t. But most of them said they would only really feel comfortable if somebody else set it up for them and showed them how to use it. But most of them had been part of a Skype conversation before to talk to friends and relatives.

Then we went on to talk about learning methods and what their preferences were for learning. And there was a strong preference for videos and then some kind of brief written material to back that up in the form of a leaflet. And their reading style, like most people, was to look at the headlines and look at articles, the subheadings, the pictures, and then decide if they wanted to read more. Most of them were not inclined to read full articles or lots of magazines because they just didn’t have the time, didn’t have the motivation

[15:05]

And then my question, I asked what helps you remember things. And I asked them, what did you learn yesterday and why did you remember it. And they mostly came back with answers about, oh it was doing it or it was something interesting. So it’s the experience of learning something and their interest in it that really made things stick in their mind.

Here’s some quotes. They were all quite straight with me. Maureen said that she wanted an idiot-proof phone with no rigmarole, you just press buttons and speak to someone. She’s an 83-year-old using a feature phone when forced to. But also using Skype on a tablet very regularly. Roy said he neither enjoys nor doesn’t enjoy using touchscreen devices, he just does it. So he says it’s a helpful tool for accessing so much extra knowledge, and the access is the enjoyable bit. So he uses his tablet to download guitar tabs and learn different songs on the guitar. And this is really what we’re aiming for in eCOA, that people don’t notice the technology, they’re not fazed by it, it’s that it’s kind of happening in the background, it’s nice and easy. So he doesn’t have any particular feeling about using them, he just enjoys the access that it provides. John said that he preferred to learn from the TV and from speaking to people, and if he wanted to know more, he would Google it. John’s 81, and he said, I like to talk to Google. Google, can you tell me. Fiona was not interested at all in learning how to use a tablet. And she also has a blood glucose meter and has had trouble with that too, but have no problems with Catchup TV which actually quite similar in terms of moving around and following instructions. But she’s happy to try pressing the buttons and learning to use Catchup TV because she wanted to do it. There was something in it for her, whereas the tablet, she doesn’t have an incentive, it’s a bother she doesn’t want to be burdened with. So there were things in there about incentive and motivation to learn. John said if he was given an electronic device to use by a doctor, said he wouldn’t be nervous, he would just get on with it. He said, love a gadget I do.

When asked about telephone option messages, I asked them how they felt about those and whether the were useful, and with a mind to seeing whether we should or could be using them within our questionnaires and things. The question was, have you used them. And then the follow-up question was, how do you feel about them. I didn’t once have to say, how do you feel about them because they would straightaway say, oh yeah they’re a damn nuisance, you can’t get where you want to be, you can’t get what you want to talk about, what you want to talk about isn’t listed, they’re a bloody pain. But then also somebody said well you know, they’re just a part of life, we’ve just got to get on with them because they’re there and that’s how we do business.

So in general, the findings, they’re not too surprising, but it’s nice to know they are based in hard research. Younger old people have similar experiences and attitudes towards touchscreen devices as the rest of the population. They may even use them more because they’ve got time to spend learning more how to play the guitar or talking to family. Really old people are getting older. And often the challenges old people face are due to aging itself, but that more things have happened to them, like their broken arm, one eye, diabetic, so they’ve got more complications. And age really isn’t the most important thing in terms of interacting with technology. It’s likely to be the general health and their attitude. But unfortunately we can’t really segment based on these premises.

So going into findings in more detail, there were three themes. One was on the technology and the size and the complexity and the familiarity of that technology, engagement and motivation, learning and authority.

So nine out of the time were already using the tablets to keep in touch with their friends and family. And I think their motivation and familiarity with this activity could really help acceptance in clinical trials. I think ideally if we’re giving provisioned devices to older people it should be tablets and not smartphones, which can be perceived as fiddly with the buttons, and the large size of tablets just make them easier to manage and they’re more familiar to this group of people. They’re also more expensive, which is difficult for the sponsors to swallow. But that’s the preference, clearly.

[20:00]

No one reported problems with charging, once they had found the right charger. And I think we’re already finding that the chargers are becoming more universal, so that helps. There was on lady who I asked about charging and she went off on, oh it’s here it’s charging oh it’s not oh the light’s on no it’s not oh what’s it doing is it plugged in is it I don’t know whose is this, and she was kind of rattling off this dialogue about whether or not—and really it should be easy. Plug it in, you know it’s the right charger, and it starts charging.

In terms of engagement and motivation, the willingness to learn and engage is linked to incentive. So there was an incentive to communicate with the grandchildren to watch Catchup TV and that’s why a lot of this group were using their tablets and they were familiar with Skype. And if we can get in on the back of that and encourage them to use products for clinical trials, then that’s great.

If they see no benefits in doing something, they just won’t do it, generally. However, if they are interested in something they’ll go to great lengths to understand it. Very few of them read magazines, dismissing them as a waste of time, but have time to read more worthy information. So I think they are pickier about what they want to learn. They’ve been there and done that and they only want to learn it—so all of the interviewees they’ve talked about their desire to learn being related to having an interest in things. It’s not really surprising but if they’re not interested then we’ve got no chance of engaging, so we really do need to make sure that we have products that are interesting and engaging. It’s kind of obvious. Or, one thing I’ll go to on the next slide, we have to get their doctor to tell them to do it. So that’s the way, you either engage them, motivate them, make them interested, or you ask the doctor to tell them to do it, and then they’ll do it.

So in terms of learning the findings were that there was a strong preference for learning by experience and remembering things that they’d learned by experience and watching videos. There’s a strong finding that when asked about something they had learned to recall an experience, so George said that he had learned the previous day not to spend too long in his garage because it was cold and bent over doing something he’d got interested in something that was in the garage, that gave him a backache. So he’d learned not to do something because something had happened to him. Roy learned that he should not go to IKEA with his wife, because it was pure torture. But he was also frustrated with himself because that is something that he’d learned and learned over the years, but had forgotten. So he learned something new but he also was cross that he’d already learned it and hadn’t learned the learning.

So something they recalled, something that had happened by experience, so we could find from that that the best way to learn is by getting them to do something, to practice some of the pressing the buttons and things. And also, people recalled something that had given them a sense of achievement. So a lady had been to see a play, she didn’t understand what the content was and what was happening, so she fired up her tablet, she looked it up on Google, and she found out about it, and then she felt really pleased with herself because she’d gone out there and found the information and then knew what it was all about.

We did have negative comments where the interviewee perceived that they had failed. So Roy said, I felt a bit stupid, I should have known that already. And George said, when we were talking about the possibility of doing user testing, he said, I don’t think I could do that because I’d be conscious of getting it wrong. So I think there’s a sensitivity there to getting things wrong. And maybe there’s a potential for errors to be taken more personally. And we just have to be aware of going back through steps or pages, and eCOA could take older people longer, and lead to frustration, whereas the younger population might just kind of brush it off as a wrong turn, they do it all the time, and they move on. So you just need to be a little bit careful on the user testing how that may affect users’ motivation.

And then the last group of key findings was related to authority. So most subjects had experienced remote appointments with doctors and they were very positive about them and they were very happy that that was an option available to them. It meant that they didn’t have to be relying on lifts, on buses, or having to go out in bad weather. One lady lived in a village and there were no buses and she didn’t drive, and she had one eye. So it was much easier for her to turn on Skype and have a conversation—actually she used to talk to the doctor on the phone. But that is routine appointments in healthcare. It might be a little bit of a leap to get people to do that in a clinical trial. In fact one subject said that they would hate remote appointments, and would do it in a healthcare situation if they were asked to by the doctor, but if it was the main way of communicating in a clinical trial, it would stop them participating. So there’s a little bit of a difference in people’s feelings in usual healthcare. They trust healthcare, they trust doctors. Clinical trials they might find they’re a little bit more wary of.

[25:27]

Lynn had been given an electronic device to be used by the doctor, her feeling about that if she was given one, she said she would be nervous about it at first but she would just get on with it and get used to it if the doctor wanted it. So there appears to be more openness and compliance to doing what the doctor says as part of healthcare but more hesitant maybe if it was part of a clinical trial and perhaps seen as less compulsory.

This is my summary. Sight is the most common challenge. We should probably try to avoid the lower spectrum in terms of sound. Older users are likely to have varied and diverse complications. No surprises here really. The tablets are preferred because of their size and familiarity. Negative feedback was received about the recorded voice messages, so we should try and avoid that channel of communication. Videos are the best way of learning, backed up by a leaflet. Learning by doing, hands-on experience, is really important. And there was a low bar for frustration. And overall, we have to make our diaries and training engaging and interesting. And these are things really that a lot of them could be applicable to other populations as well, not just old people.

So in conclusion, older people are getting older. I think we could split this population into groups, the same way we do for paediatrics. We don’t treat paediatrics as one group. Perhaps 55-75, 76-82, 83 and over. But that middle group is one that is really really varied in terms of attitude and capability. And really it depends on the mental age and the outlook and willingness to engage. But really I think this type of study is very valuable because it allows for the identification and resolution of specific challenges prior to implementation in a trial. So we can talk to sponsors with real knowledge about what challenges are faced and how we can resolve some of them, and design based on those challenges, providing opportunities to engage patients, and make it easier for them to complete eCOAs. And the plan really from now is to continue with the research on different populations, share our findings internally and externally, and with all of that knowledge build better products.

And that’s me. Thank you.

MODERATOR

Thank you very much for that. I’m a bit scared that 55 is classified as an old person. I’m not so far away. What happened to middle age being young. I seem to have skipped middle age here.

But the whole idea of incentive to learn, incentive to use technology is very relevant. I like that concept a lot, it resonates in the older 55s prepared to use technology, assuming that it has a value and an interest to them. So the example of Skype is very relevant, I guess they’re talking to their grandchildren or their families or if they live away from their friends. So Katie, thank you very much.

Could I open it up to the audience for questions, please.

[Q&A section starts at 29:08]

AUDIENCE MEMBER

Thanks Katie, that was really great. Thank you very much. So I’m intrigued about how we can make the device more valuable to the patient. And you know, in younger patients, we have been looking at things like gamification and things like that which is kind of a nice way to encourage and engage more. I don’t think that’s going to work in this age group particularly. But I was intrigued by the idea that they’re willing to use stuff that’s of value to them. So what could we allow them to do on the devices that we provide that might add extra value to them? So could we, you know, have an e-reader library that they can use it to look at stuff that they're interested in or to read novels, or could they have a Netflix subscription, I don’t know. Is there something else that would make the use of that device valuable to that cohort, do you think.

[30:12]

KATIE GARNER

I think ideally, BYOD would suit them, the tablet. But we’re not there yet. So if we could have BYOD then they would have access, we would be using their technology which they’re familiar with which they already get the benefit from, so they like it. So we’re not offering them anything extra. But as that’s not available to us yet, games were something that people were doing on it, so things like Solitaire. But I think we’d want to be careful that that wasn’t seen as patronizing, you know, we’ll give you a tablet and you can play games on it. But that’s what people are doing. You know, searching for information. So access to Google, for them it means maybe offering them all empowered internet connections. So I’m not sure, and I didn’t really get into thinking about provisioned devices and what else we could offer on there, but there’s definitely something that we could do. Just needs a bit more thinking about really. Good question.

AUDIENCE MEMBER

Hi Katie, thanks very much for the presentation as well. Just your research, obviously you’ve done ten out of ten patients in the UK who have nine out of ten all used tablets. Obviously my question is, as you might guess, have you done anything in other countries that maybe don’t use them as often? I mean we’ve had some reports from our study that older people from Poland aren’t very comfortable using those devices. So it’d be interesting to see how this kind of scopes in other countries that aren’t maybe have as much tech as us, for example.

KATIE GARNER

I think it would be really interesting to do that research in those countries, because this group, they’re almost self-selecting as well. The first group I talked to, Bovington Evergreens, the ones that were really not interested and not following, well you know, I didn’t get to talk to them. So I didn’t get their information. And then the people that I asked in the community, the ones that said yes, first of all a few of them said oh no I don’t know anything about that, and I had to reassure them and say well that doesn’t matter. I’m not asking you what you know about it, I just want to know—the more you know, the less you know, it’s totally irrelevant because we’re just trying to get a picture. Well that is a challenge and I think it’s a challenge in any kind of user testing to get something that’s really representative and really get the people that wouldn’t normally engage in that. And I think if we were going to do this in another country we’d probably have to do some external research. Definitely worth trying to do that though I think. And if we could find a country that is significantly different, that would be good too.

AUDIENCE MEMBER

Hello. I have two things. Firstly I would like to say, as a comment on what you are saying right now. So many years ago, I think it was about 2005-2006 when I was at AstraZeneca we did a study with elderly population and that was in the Czech Republic, I believe or Czechoslovakia and Hungary. And we had a compliance rate over 90% in that study. And that is also something that you were discussing in your presentation about learning and it’s all about like you tell me, show me, involve me, and then I’m actually getting it.

But my real question, and now I will actually stand up for you, hello, you see I am in the elderly part of the population, proud of it. So how long are we going to make this distinction about we and them and elderly people, because thinking of the era, the era of technology that we are living in today, I mean my mother in law, she is 89, she just bought herself a new tablet. So perhaps it’s more important that we distinguish our future patients, not only for the age but also for the disease that we want to look at in the study. Because bad eyesight or hearing or anything else, that is not a privilege only for us elderly.

[34:58]

KATIE GARNER

Yeah that’s absolutely right. And we’ve always had the same view that when asked—and that’s why we’re looking at it, because we were asked by sponsors about older users—that the compliance is really high. Second highest after paediatrics, carers of paediatrics. But to have something more solid is useful. So age, and the things that were coming up there, those weren’t the challenges, it is down to the disease. This gives us useful information to pass on to sponsors, but I think you’re correct, it is the problems, not the age.

But it is not useful really, to talk about older people as being over 55. I mean I was quite stunned when I looked it up and found that that was the case. It would be better to not focus on age at all.

AUDIENCE MEMBER

I fully agree. We have the same experience with elderly people that have a perfect compliance on the one side, but on the other side we have the feedback that we lose a lot of patients in the elderly patients, they refuse to start with the trial, to participate. So if they’re in the trial, they have a very good compliance, but we lose a lot of people up front, you know, refusing saying no, I do not participate.

KATIE GARNER

Yeah it’s the fear, it’s the worry that they won’t be able to do it or they don’t understand it. And that’s the same with being given a piece of technology, it’s you know, that oh, that’s not for me, and kind of blocking it out because they can. And I think younger people are perhaps more go with it, but older people they’ve been there, done things, if it’s not essential to them, they don’t necessarily want to engage.

AUDIENCE MEMBER

Yeah and I think when it comes to usability, and I think to your point, we need to be looking at representative groups rather than necessarily old or diabetic, whatever. We need to be looking at can patients with eyesight problems use this device, can patients with dexterity problems or cognitive impairment use the device. And really if we cover three or four of those representative groups, I think we can apply our usability results to generalize it to most groups of patients, actually. So maybe not necessarily looking at old, although I do agree, we always get asked about can you use this, is this suitable for use in elderly. It seems to be a real hangup amongst our sponsors and customers. So we actually do need more data just to sort of dispel that myth, I think.

AUDIENCE MEMBER

I just wonder how did you recruit them and what is the best way to recruit them. Recruit them to go in to participate.

KATIE GARNER

It was informal. So I spoke to the local community group, and I recruited about four interviewees from there. And then I talked to all the people about the research I was doing and they said oh I know somebody that will be happy to talk to you, or I asked people in that particular group to talk to me. So it was very community-based in the local community where I live. And that was how I got that group together. In terms of the patient advocates for the wider expert networks, I did a lot of work online with those and contacted people. But I didn’t get much luck really there. I think probably patient advocates and even the clinicians probably get approached so many times by so many people that it’s difficult for them to find time or even want to engage with somebody that’s just sent them an email describing what they’re doing. So recruitment is difficult. And if we did go into another country and look at their differences there, we could use a commercial company that would do recruitment and do kind of research study there for us. I didn’t stop people on the streets or anything. It wasn’t like that.

[39:29]

AUDIENCE MEMBER

Hi. I did a fair bit of work in old people, back in Australia when I was there for my post-doc. And in terms of recruiting, what I found was really helpful was to just go there, go to the community center and make a presentation. But in the end what actually really engaged them or convinced them to take part in the clinical trial was when you were just giving them the tablet and you know, sitting there and letting them try it out. So that was really the one thing which convinced them. Not so much talking about it, you know, emailing them, giving them information and stuff like that, but really engaging them so they really can have a hands-on experience and realize oh it’s really that easy. So then you have that point where you can convince them. Yeah, because for my experience it was 150 people from Australia and Spain and Germany, Cologne. Because we, for example what you said with the Skype experience, we had hardly anyone being on Skype. So they were quite native to—digital natives as we call them. So there was a broad, I would say, sample. But in the end, you know, they wouldn’t come up and say oh that was a great presentation, where can I take part. So you really, it’s a personal contact, and then you can overtake them. And for what you said, I think there’s three things in the end which really make the difference. It’s not so much that you offer them additional value, it’s more that the device is reliable, you know, doesn’t have any error messages or fancy things coming up, pushup messages in that, notifications or stuff like that which distracts from what you actually want. And usability in terms of navigation. Because that was always a big issue, as you already said, so where to go, where to start, what you have to do next. So in terms of a vision, you know, that would be—it’s not so much vision in terms of how good is your vision. It’s also the contrast vision, which is an issue. So you know, in terms of colours, you now, try to avoid like yellowish onto white background, like simple things but that really makes the difference. Because when the lighting is bad, and you know the angle for the tablet is kind of weird, they don’t see a thing. So you know, you’re standing there going like this, you know, although the device is perfectly working fine they have their glasses on and you're going like oh can you see it now can you see it now. And so there’s a lot of aspects going into that. And I think it’s very very good talk and very important talk as well. Thank you very much.

MODERATOR

Any other questions for Katie at all? No, okay. Katie, once again, thank you very much.

[END AT 42:50]

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Methodological and Practical Considerations for Developing Electronic Clinical Outcome Assessments (eCOA) in Rare Diseases
Methodological and Practical Considerations for Developing Electronic Clinical Outcome Assessments (eCOA) in Rare Diseases