It has become the norm for designers in other commercial fields to try to make their interface designs 'accessible' for users with a wide range of physical, sensory or cognitive disabilities. Best practice has been codified and is now well understood. The clinical trials world, however, lags behind. Perhaps it is because in our industry we have more pressing concerns, such as the danger of bias in the layout of questions and answers, or the need to demonstrate equivalence between modes. This talk will summarize lessons that have been learned about 'accessible design', and reflect on how they could be of service to us. They may well be a way not only to improve the experience for patients, but also to widen the scope for gaining direct feedback from a broader pool of patients. After all, some people have - for merely technical reasons - been thought to be outside of a study's scope.
So the last speaker for this section before we move to a panel discussion is Paul Margerison. Where are you Paul?
Paul speaks to us from the field of design rather than medical science, which makes Paul’s perspective quite unique. And Paul is one of CRF Health’s User Experience Designers, and he hails from and is based in London. Paul plays the role of the end user’s champion, and Paul spends his entire time reminding everybody that actually the technology and the devices and the use of same, we actually put them into the hands of end users, and those end users are in fact patients. Paul is passionate about making those devices easy to use and user friendly. And I think the two are quite uniquely different in their own regard. And Paul has worked on the design of many products across numerous sectors, from news to telecoms. And prior to joining CRF Health he was the head of digital user experience for the education and arts organization, the British Council. Paul.
Thanks very much, John.
As John said, I speak to you as a user experience designer. So that’s to say I’m very interested in the user interface, in the interactivity of the things that we put into people’s hands. Well, in support of the design of the study. So I’m not an expert in the design of studies, but in the design of the thing, the physical thing, and the interface.
And I’d like to speak today about something that really ought to be very close to our hearts but many of us are not really aware of it, and that’s the fact that within the design world generally, outside of our eCOA field, there is a branch of design known as accessible interface design or inclusive interface design, which has its own rules and its own history, and I feel it’s time for us to start embracing that design discipline.
So this is what I’d like to speak about today. Simply to mention that people with so-called disability are able, do use electronic equipment extremely successfully, and that there’s equipment out there to help them to do so. Also that other parts of the design world, so other industries, are engaging with those people as customers already, and that we are perhaps lagging behind in this field. So I’ll leave us with a creative challenge, not necessarily a solution, but a creative challenge. But first of all, when I say disability, I just want to make a slight difference between Katie and Chloe, I’m not talking specifically about people with a disability as a result of a therapeutic area, so this problem that they have, although it may be. But I’m talking about potential patients who come to us already with some challenge, who are then involved in clinical trials for something else. But their initial challenges may well impede the use of electronic devices somehow.
So take for example a blind person, you might wonder how a blind person could even use a touchscreen device to fill in data in a questionnaire. Well, this here, as you can see on the screen, is called the Refreshabraille 18, it’s the world’s most popular braille display. It’s very clever. It reads the information from, in this case, a mobile phone, from an electronic device, and displays it with little plastic pins one line at a time as braille characters, and when you see somebody who’s an expert in using a braille display, it’s amazing how quickly and how efficiently people are able to read an interface like a questionnaire.
But that’s just one thing. Braille display is one thing, I suppose it’s the extreme of our challenges.
Here’s a montage just to show you, to impress that there’s an awful lot of assistive equipment out there that can intervene between the user and the information. For example, here you see somebody using a screen reader. Many different ones of those on the market. The patient on the top right is using a so-called sip-and-puff device, so he doesn’t need to use his hands at all. You have any number of different accessible keyboards. And the lady down here on the bottom right is using a screen magnifier, which looking at that photo you can see, you can probably tell that this user, this patient would greatly benefit if the designer of that interface had thought about what she needs, because the vast majority of this screen effectively, of the design, is off-screen, above it, below it. She needs to be able to anticipate where the salient points are. So the designers need to work with her expectations to make this work.
Okay, so we have a large number of assistive equipment out there on the market that is adapting to our regular mainstream websites, web apps, and so on, and other screen-based productions. I just wanted to show you a few examples of the types of accommodation that the design industry generally does tend to make quite successfully these days. And here you have a commercial website seen on the size of a telephone, in which the user of this website has been able to specify the font size. It’s as simple as that, but not all websites allow you to do it. It is within the code of the site that either does or does not allow this to happen. Flexibility is very important for you to be able to set the environment that’s right for you.
And here’s another example. If you were to make an app, a site, which is to be acceptably accessible, you need to be able to specify your own colour scheme. So here you’ve got three websites seen as you’ve never seen them before. They’re eBay, NHS, and Marks and Spencer’s in a beautiful colour scheme that the user has chosen. Of course, this is not designed by the designer, but the designer did put together the flexibility which allows this to happen. And certainly, not all productions do that.
Another example, I’ll make this a quick one. The RATP, the Paris metro system. Helpfully, this is quite an accessible website generally, but there’s one little thing where it slips up, that if you look on the right you can find out which lines have got delays at the moment. So I roll over it and find that Line 5 has got delays. But I wouldn’t be able to do that if I was not able to use a mouse. So there you’ve got an example of a website that’s not managing to meet expectations of accessibility.
And those expectations have been codified formally by an organization called the Worldwide Web Consortium, who published its guidelines some time ago now. They’re broad guidelines backed up by 66 very specific checkpoints that offer us a kind of benchmark to decide whether our interface is accessible or not. And it’s often quoted as a statement of law that if you meet these guidelines, your interface is legally accessible. Of course, that’s nonsense because the W3C is not a legal organization. But there are some countries—the United Kingdom, the USA—there are some countries that do have legislation in place to require companies to make their interfaces accessible. And all of that legislation always hearkens back in its guidance, looks back at the W3C rules. So in a de facto way they have become a kind of statement of law.
But you can boil them down to these four qualities or properties. Your interface has to be perceivable generally, even if you have sensory difficulties. Your interface has to be operable generally, even if you have some motor difficulties—being able to use a mouse for example. Your interface needs to be understandable, even if you find it difficult to read textual or even diagrammatic information—you’ve got to be able to understand the meaning. It has to be robustrobust because all that assistive equipment needs some accommodation to make it work well. So those are the rules laid down by the Worldwide Web Consortium.
And here I’ve got a slide for you. I won’t read it all out, and it’s a bit over-theatrical, I admit. But the point about doing a slide like this was I wanted to show you that accessible design, or inclusive design as it’s also known, is a thing that has got a history, has become mainstream, it’s got its own best practices. It started, I put the date about 1996 actually when you could see the first steps of thinking about accessible design. And it’s been driven forward ever since, through legislation, through technological advance, sometimes through litigation of perceived offenders. And it’s with us. It’s there, and it’s been there for a long time now.
But about halfway through that chronology, you got the mobile revolution, we had the appearance of mobile devices. And at first a lot of people thought that these were intrinsically limiting in themselves. You know you take a two-inch screen, you can hardly blame it for being difficult to read for certain people, just like you wouldn’t blame a tree because a wheelchair user isn’t able to climb it. So there was that thought at first that accessibility was a difficult thing to achieve with mobile devices. And besides, the design world, the mainstream design world, had enough on its plate to make devices like this usable for everybody, for the general public. So accessible or inclusive design kind of lost focus a bit in the industry. But, surprise surprise, shortly after these devices emerged, so did an awful lot of ways to be able to use them if you have challenges, if you have sensory challenges, if you have motor challenges, that actually led the mobile revolution to being an incredible boon to disabled users, just as the internet, the desktop internet revolution had done before it.
So another slide, I won’t go all the way through, but if you’re a speed reader you might pick up quite quickly, this is a kind of summary of where we are today. We have a discipline within the design discipline that’s a branch that might be referred to as accessible or inclusive design. It’s now a mature industry, it has its established best practices, it’s survived the mobile revolution. And it’s something that designers will do for you without being asked. So if I was to go for a job interview as a designer of interfaces, it would be taken for granted that I would understand what accessible design requires.
So let’s have a look at the eCOA world, where we also make interfaces on electronic devices for use by the general public. We ought to be especially anxious for our interfaces to be accessible really, given the medical setting. But the thought about inclusive design hasn’t really penetrated the thinking across the industry, I don’t think, yet. You don’t hear designers and sponsors and medical directors and so on, you don’t hear them ask whether or not this e-questionnaire respects Worldwide Web Consortium accessibility standards. You never hear that. But if we were designing an app or a website to sell shoes or holidays or insurance, then that question would always get posed.
So right, a practical example, one which I’ve completely made up, I don’t want to name and shame anybody. This is a fictitious questionnaire with a question and a simple answer that you enter with a so-called number spinner. I’ve made this up but it’s very much like something that you might see in the eCOA world. And it’s quite straightforward and easy to use, certainly I find that very easy. It’s clear. The colour scheme is relatively pleasing and elegant. It doesn’t appear to have any problems, it’s a very simple interface.
There’s the same thing, recast in a slightly different way that respects more closely the standards that the Worldwide Web Consortium guidelines would suggest. Obviously the font size is always an issue, I mean for most of us, let alone people with vision difficulty. It’s increased the font size, it’s done that thing which we refer to as chunking, which is to make the piece of text broken up more. So the text on the left is much more intimidating, and the one on the right doesn’t use an underline. An underline makes a piece of text viewed on screen more difficult to read. So we’ve changed that. What about moving forward and allowing the same text to be read out, have an audio version of the same thing, to read alongside what you hear. It’s a very useful thing for certain challenges. What about allowing really considerably enlarged fonts. This is the kind of thing that really makes a difference between being able to read and not being able to read for certain people. But you see the presentation now has done away with the requirement to keep everything above the fold, to not scroll below the fold.
And I haven’t mentioned BYOD at all, because this isn’t a talk about BYOD, but that would be one of the byproducts of BYOD, bring your own device. You don’t know the size of people’s own device screens. You would have to let go of the requirement to keep everything above that fold. And also the requirement to know exactly what everything is going to look like. We ought to be able to allow people that flexibility, flexibility like this.
So these are some examples of applying our known best practices about designing interfaces to the eCOA medium. It’s not at all a kind of personalization gimmick, as I said, it really does make a difference between seeing and not seeing.
I was thinking about why it is that we may be behind the curve. I’ll quickly go through what I’ve listed, five different reasons. I’ll not go too deeply into them but perhaps there’ll be time in the panel discussion afterwards. In my opinion, these are five reasons why we may be behind the curve. There’s an imperative that all patients have the same experience so that the questions that they answer are psychometrically equivalent, and you can do that amazing thing of taking subjective feelings and thoughts from a person and turn it into measurable data, which I think is brilliant. But there’s a tendency to want the patients to have the same experience in order to be able to do that. And that leads to rigidity and lack of flexibility in presentation. There’s an urgent need to eliminate bias in a question so that no one part of that question stands out more visibly than another. Again, that causes inflexibility in the layout. There is a belief that electronic instruments that are developed from paper instruments need to replicate the appearance of the paper instrument as closely as possible. Personally, I would disagree with that from a number of ways, but then I didn’t spend two years designing an instrument and studying it and studying the statistics behind it and so on. So it’s easy for me to say. I do understand why there's a feeling that we really must keep the same look as the paper questionnaire, which is known to work. That not enough work has gone into equivalence testing the different ways of showing a question. Paul O’Donohoe who has recently published a work that looked at lots of equivalence testing, and I know that the world has done a great deal of it. But I don’t think there’s been much in the field of for example studying how a question presented in small dark blue font compares with a question presented in the enormous pink font. Never been looked at.
My final question, simplest of all, is that eCOA is quite new. I think it’s about six years that it’s had some momentum as a medium out in the industry. It took a lot longer than six years for the mainstream web industry to develop its own grammar, its own good design practices, so perhaps we shouldn’t be too hard on ourselves. However, I would like to pose at this point six years in, what is the primary creative challenge? Is it A, to ensure that all patients experience the same presentation? Or is it B, that patients should be allowed to experience the style of presentation which is right for them as individuals. If it’s B, that’s quite a radical departure and a little bit disconcerting, because there’s a feeling that it might damage the integrity of the data.
So I’ll give you a precedent of how another industry is doing something similar and it doesn’t appear to be damaging the integrity of the data. This is the insurance industry. They use instruments which have been very carefully designed by risk assessors, underwriters, and so on. And once those instruments have been designed, then the visual designers, the interface designers, have got no flexibility to change a dot or a comma or anything anywhere. However, they are under the obligation to make this an accessible interface. So any instrument like this that you’ll find like this on the web can be customized to the way that you need to be able to see it. And it still appears to work and they still appear to be able to sell the same insurance products with the same degree of risk attached to them as they would if it was a single presentation.
So finally, my goal as a user experience designer is to create the clearest possible understanding of questions for any individual user of an interface. Our interfaces tend to be very very simple. But still, it’s in that act of understanding that we need to see whether or not we’ve created the clarity that’s going to give the answer right from the heart. And industry tells us that in most circumstances, it’s when you, the user, are able to adapt the environment to exactly the appearance, the sound, the sort of technological setup that works for you.
That's the end of my talk. Thank you very much.
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