#About the episode
A chat with Sheena Campbell from the Patient Information Forum (PIF).
This episode covers the importance of health literacy and how numbers and data can be confusing or challenging for many people when accessing healthcare services.
We discuss how numbers appear in healthcare, such as medication dosages, appointment times, and risk and benefit communication. Sheena provides insights and tips on how to present health information and data in more accessible and understandable ways.
#Episode links
#Timestamps
01:44 (1 minute 44 seconds)
Sheena's relationship with numbers
Sheena discusses her complex relationship with numbers, her love for data, and her anxiety when numbers are unclear.
02:16 (2 minutes and 16 seconds)
About the Patient Information Forum
Overview of the Patient Information Forum (PIF), its membership network and the PIF Tick quality mark.
04:03 (4 minutes and 3 seconds)
Membership and benefits of PIF
How individuals and organisations can become members of PIF and the benefits of membership.
05:11 (5 minutes and 11 seconds)
Health literacy
The importance of health literacy, statistics on health literacy in the UK, and the challenges faced by people with low health literacy.
08:41 (8 minutes and 41 seconds)
Numbers in healthcare
The challenges of presenting numerical information in healthcare settings.
13:25 (13 minutes and 25 seconds)
Communicating medical risks and benefits
How to communicate medical risks and benefits using natural frequencies and absolute risk.
23:03 (23 minutes and 3 seconds)
Health information in medical settings
Inconsistency and outdated nature of health information in GP surgeries and hospitals.
32:02 (32 minutes and 2 seconds)
Writing medical questions
Tips on writing clear and accessible medical questions and forms.
35:53 (35 minutes and 53 seconds)
User-centered design in health information
The importance of starting with user needs and continuously testing with users when designing health information.
40:49 (40 minutes and 49 seconds)
Misinformation in healthcare
The impact of misinformation in health information, the difference between misinformation and disinformation, and how to identify trusted sources.
#About Sheena Campbell
Sheena Campbell is communications manager at the Patient Information Forum (PIF). PIF is the membership network for cross-sector health information producers. It also runs the PIF TICK – the only independently assessed quality mark for print and digital health information. Sheena delivers training and edits guidance on topics including plain language, health literacy and risk and benefit communication.
#AI generated transcript
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Laura (00:00):
Hello everyone and welcome back to the Accessible Numbers Podcast, a show about designing services for people with dyscalculia and mass anxiety. I'm your host Laura, and I'm a content designer with Lived Experience. I have another cracking episode for you today. Today's guest is Sheena Campbell. Sheena is the communications manager at the Patient Information Forum, otherwise known as PIF. She also delivers training on topics including play language, health literacy, and risk and benefit communication.
The Patient Information Forum is a membership network for cross-sector health information producers. It also runs something they call the PIF Tick and independently assessed quality mark for print and digital health information.
And if you're looking for the PIF tick on any healthcare information, it's a massive giant green tick.
We cover so much in our conversation, but here's a flavour of what we discuss.
So we discuss health literacy and why it matters, how to make health information accessible, how numbers show up in health services and the challenges of communicating risk and benefit in healthcare.
This conversation is vital for everyone, not just those working in healthcare. I promise you'll get a lot from it.
For more on how to present numbers clearly, visit accessible numbers.com. You can follow me on LinkedIn or Blue Sky by searching accessible numbers. We did have some technical issues at the very start and the audio just get better. Three minutes in, however the conversation is still brilliant. Let's go.
(01:41):
Sheena, how do numbers make you feel?
Sheena (01:44):
I think I have a bit of a strange relationship with numbers because I love data. I love to have loads of information and really dig into it. But then at the same time, if I don't immediately understand the way numbers presented, I find it quite off-putting and sometimes I get quite nervous about doing it wrong. So if I'm ever presenting data in my job, I have to triple check that I've done it correctly. So it's a weird thing where I love having the information available, but if it's not presented in a way that's accessible to me, I quite quickly get nervous.
Laura (02:16):
And as we'll get into later in the episode, these numbers you're talking about are vital, so I completely understand the nervousness around getting them right. So you are a writer and communications manager for the Patient information forum, otherwise known as Piff. Can you tell the audience a little bit about PIF and what you do there?
Sheena (02:37):
Sure. So PIF or the Patient Information forum is the UK membership network for anyone producing health information. So that's everything from big health charities like McMillan, the individual NHS trusts, really small patient organisations, pharmaceutical companies and medcoms agencies. We produce guidance and training on core areas like using plain language, clear risk and benefit communication, which I know we're going to be talking about a lot more today. Health literacy, things like that. We also have a health and digital literacy charter, which we ask organisations to sign, which is committing to making their health information is accessible as possible. So that covers core accessibility issues, but also the appropriateness of language presenting risk clearly again. And PIF also runs the P tick, which is the quality mark for print and digital health information, and it's the only independently assessed quality mark for health information. So I actually trained as a journalist and started working with PIF several years ago now and just discovered this real passion for health literacy and a lot of the rules of clear communication that I've used in my previous career really transferred to health information. And over the last few years I've just developed this real passion and love for this accessible appropriate health information.
Laura (04:03):
So am I right in thinking people can become a member of the patient information forum?
Sheena (04:09):
Yeah, absolutely. So anyone that's producing health information interested in health information can join. And we have scaled membership because we're a charity, so it's not to make profit. So individual membership is the cheapest working up to smaller organisations and then large organisations have the highest membership fees. As a PIF member, you get access to all the guidance and discounts on our training, but you also get to access the network of PIF membership, which is really valuable. So much expertise within the membership itself.
Laura (04:44):
Can independent people like myself become members or do you have to be part of a kind of health organisation?
Sheena (04:50):
No, absolutely. Anyone independent can join. We've got lots of freelance members, we have individual members of the PIF tick as well. So yeah, it's really open to anyone at all that's got an interest in health information.
Laura (05:03):
Oh, great. I think I might consider signing up then.
Sheena (05:06):
I'd love to have you. Oh,
Laura (05:07):
Thanks. Let's talk a little bit about health literacy. I'm going to read out some stats, which is quite hard for me to do. So bear with me. So in 2016, the NHS found that half of UK adults between 40% and 60% don't understand health information. And I was reading on the Patient Information forum website, you did a study I think called Health Literacy Matters, and there were some really important and key data points that came out. The first one being 1 million people cannot follow a letter from a GP surgery to a hospital, 6.5 million cannot measure or record their height and weight on a chart, and 9 million people were unable to use digital tools without help. Now this last point's quite interesting because my local surgery has just transitioned to an online only appointment system, whereas you used to call up the kind of online appointment system has always been available as a second option.
(06:10):
I never used it before myself. I always prefer to call and I went to call the reception a few weeks ago and they told me that I had to go online and fill out a form to get an appointment. And I was just thinking about the data in this sort of survey, the study that you did and how inaccessible that is for people who perhaps can't get online. I remember there was a video explainer about how to use this new online system, but it didn't have any subtitles with it. It was quite hard to hear. The sound wasn't great, I just read this report by you and then I went and called my GP and it was kind of astonished really. Yeah. Can you just give us a quick explainer of health literacy and what you think to these data points?
Sheena (06:55):
Sure. So just on the Health Literacy Matters poster, that's actually combining lots of different research studies. So it wasn't our original research. It brings together lots of data from other people, but there's lots of different definitions of health literacy and ironically a lot of them are really complicated. But for pif it really comes down to information being produced in a way that people can understand and use to make informed decisions about their health. And some definitions put a lot of burden on the individual to improve their skills and we do believe people should be supported to do that, but we do believe it's a systems issue as well and that information should be produced in a way which is accessible as a starting point. I think it's really interesting what you said about the digital element because health literacy is getting more complex because people are not only having to have that traditional literacy, numeracy, media literacy, but also that digital literacy to be able to use digital tools.
(07:52):
And lots of people still can't, this assumption that everyone's online, that everyone can use digital tools. But actually we see data coming out every year from a really interesting report called the Lloyd's Digital Consumer Index, which shows that for example, during the cost of living crisis, people were actually turning off wifi, there were more people offline than there had been previously. And there's lots of different barriers to people being online. So some of it's cost, some of it's confidence, people are quite scared about things like data security and some of it's people just don't want to, they want to interact with a real person in speech marks. So it is getting more complex the skills that people need to navigate the health system and to make informed decisions about their health.
Laura (08:41):
Yeah, I was just looking at some of the other stats from the health literacy infographic. You have online older people are likely to have lower health literacy. 50% of the population are at all below primary school numeracy level, which was really eyeopening for me because I talk a lot about my struggle to understand numbers within healthcare and to know that 50% of the population are at a low primary school numeracy level. It just highlights the importance of us talking today and trying to make numbers in healthcare accessible. Just on that subject then, let's talk about some of the ways that numbers show up in healthcare. And I've got some of my own examples here. So unfortunately when I was a teenager I misread the dosage information on a medication. I think it was like take these three tablets twice a day and I think I doubled the dose or something like that.
(09:48):
I remember I kind of finished a packet way before I was supposed to and my mom was like, where's the medication gone? You've got another three or four days left. Anyway, I was fine, but we did have to go to doctors and things and now I'm super, super cautious around anything to do with taking medication. If I have to go to a pharmacy to get a prescription, I will stand there and make them tell me several times when to take it and I'll write it on my phone just to be doubly sure In other areas, the appointment dates and times have been really tricky for me. So if that means turning up on the wrong day for appointments or even getting the year wrong, some appointments as well. And I was reading an NHS study around why people miss appointments and one of the findings was that if you have made an appointment and it's been a year, so sometimes it can take a year to have an appointment, there's actually no reminders of appointments coming up.
(10:51):
So if you're like me and other dyscalcu may have time blindness where we see time differently, it can be very confusing to understand how long you have to wait and when the appointment is, if it was booked years in advance, which some appointments are sadly. So yeah, appointment dates and times is a real mystery and because you have the complexity of it being a medical appointment and the anxiety around going to see someone in the medical space, I think it just kind of compounds from there. So if I have a medical appointment, I will probably clear my calendar a few days before then, so I will try and not have any meetings and on the day of the appointment I will make sure I'm in area hours before I need to be there just in case. And yeah, I'm the one that sits in the waiting room like 40 minutes before the appointment time just to make sure I'm there and feeling comfortable. What are some of the ways you think numbers can be confusing or show up in healthcare?
Sheena (11:56):
I think you mentioned one of probably the most dangerous ones immediately there, which is the dosage information. And if people don't understand how they're supposed to take medications correctly, either they can take too many as you mentioned or they can just be so scared that they don't take it at all, which can be equally worrying. And I think you also mentioned an interesting way about anxiety because everyone tends to be more anxious in the healthcare setting. So even if normally you're quite confident of numbers that can very rapidly drop when you've got that anxiety, maybe you are expecting a diagnosis, maybe you're experiencing side effects. So that's another challenge, which means that it's not just a small proportion of people that are affected by these issues. And I think that's a misconception sometimes. But really numbers are everywhere in healthcare. You've mentioned appointment times and doss, but also risk and benefit communication is a really crucial one.
(12:52):
So what is the risk of getting a side effect? What is the risk of having a particular procedure? What are the potential outcomes if you have a diagnosis? And if people can't understand those numbers that they're given, it means they can't make an informed decision. And that's a crucial part of shared decision making. It's a crucial part of making patients feel more empowered. So for us, that's one of the key areas where we'd like to see an improvement in how numbers are communicated to make it much easier for more people to make informed decisions about their health
Laura (13:25):
Just around the theme of assessing medical risks. Then, so I cannot remember where I got this start from. I will try and look it up and I'll link it in the show description, but people with mass anxiety are not confident assessing the risk of medical treatments. And I would categorise myself in that area. Now your specialty really is medical risk and benefit communication. So I'm so happy you've agreed to talk to me today. Some of the ways in my life that this shows up for me is the probability of recovering and how I work that out not only for myself for my loved ones as well, and sickness is a real scale. You could have the flu and you could have something. It is a sort of really massive scale, isn't it? And working out how likely you are to sort of get worse or how likely you are to recover if you take a drug or how likely you are to have a side effect.
(14:24):
So you mentioned there are people feeling anxious about taking medication. I am one of those people. In fact, I actually have to be around people to take a tablet. Now, this is partly because of what happened to me as a teenager, but partly because of my anxiety and I kind of have a sense that something's going to happen to me after I take this medication. I might have a reaction to it or you might go terribly wrong. So for the first time I take a tablet, I feel like I need to be around people. And actually a memory just popped into my head of COVID-19. So this chat is all around numbers in healthcare. And I remember during the pandemic at the very beginning, well perhaps maybe throughout the whole thing, there were those daily briefings and they had the charts and the graphs and all the kind of death rates and it was all numbers basically.
(15:21):
And I just remember feeling so paralysed by the fact that I couldn't understand what was going on. So I felt disempowered because I was looking at the news, I was reading all these articles, couldn't quite understand the scale of what was happening. As someone who already has anxiety in general and medical anxiety and I'm not good with numbers, it was just too big a mountain to kind of climb really. And I remember sort of saying to my partner and going, can you just explain this to me? How serious is this thing? Can I go outside and I have to rely on people to interpret the status of for. And I think that is key, isn't it? People rely on the services to interpret data and numbers for them. We don't always get the raw data and the raw numbers. So I think it's really vital that especially in healthcare, but basically every service has a duty of care to present numbers clearly and to interpret data in ways that people can understand.
(16:29):
I just had to tell you about that because as we were talking I was like, oh yeah, through covid it felt really dangerous and disempowering and it was. But for me it, my experience was I feel kind of paralysed by that in the sense that I couldn't quite understand the gravity of it. And yeah, it was a messy time for everyone I'm sure, but it just goes to show that the numbers are so important in things like that. Anyway, we were talking about this kind of medical and benefit communication to do with risk and outcomes. So what are some challenges that you face when you write this type of communication and what's your approach? If you could share some insights and some tips, that would be wonderful.
Sheena (17:17):
Sure. I think the key is that healthcare data by its nature is complicated. I mean you mentioned about during covid, and I think when you feel disempowered, it feels quite isolating. But we did a study called Covid Choices and the results from that showed really clearly that lots of people felt overwhelmed by the information in lots of different ways. But because medical research is complicated, unfortunately it's not normally nice round numbers. So anyone providing that research to the wider public does have a duty to present it in a way which is understandable. And there's lots of ways to do that. But what we would say is don't avoid using numbers completely because if you just use verbal communicators of risk, that actually comes with its own problems because people's perception of risk is very different. So for example, if you just say a side effect is rare and don't give any numbers, there's been research which shows that people overestimate the risk.
(18:14):
So they'll estimate a risk that's described as rare as say 30 people in a hundred, when actually it's two people in a hundred that are going to have that side effect. And I saw this in my own life. My dad was diagnosed with terminal cancer nearly three years ago and he was lucky enough to be put forward for a clinical trial, but when he got the clinical trial information, all the information that he got about side effects all just said rare, common, and he didn't have any context for what that meant. So he was really overestimating what the likelihood of him getting those side effects was. And it was only because I was there to look it up for him and say, oh, actually what they mean is one in a thousand people might have that and then he could then make the decision to go on the trial.
(19:00):
But perhaps if he didn't have me there to do it for him, and he might have made a very different decision, not gone on a trial, which has significantly prolonged his life. So that's just an example from my own life. In terms of things that health information providers can do to help, we would say one size does not fit all. So take a range of different approaches because people understand numbers in very different ways, so use different formats. Simple graphical representations can be really helpful. The Winton Centre for Risk Communication did a study and they found that those kind of very simple familiar representations like bar charts and graphs are much more useful to people than things that look very pretty but unfamiliar. So that's one thing, but not everyone understands visual representation. So again, don't just use those numbers as well. One of our other tips is to use natural frequencies rather than percentages. So what we mean by natural frequencies is saying one in 10 people rather than 10%, generally people find that easier to understand because as soon as people hear percentages, they brain goes, Nope, school maths scary. And they stop engaging.
Laura (20:18):
It's so funny you said that because I am one of those people I really appreciate. I think I saw something, maybe it was Cancer Research UK and they'd done out of 54 people, 37 people had this effect or something. And I thought, oh, I understand that. Yeah, so percentages actually, national numeracy suggests that percentages are something that I think it's about 80% of people struggle with. It's really a huge number. So yeah, so whenever I see a percentage in the medical sense, I'm not sure what it means. So I'm really glad that you said it's called natural frequency. Did you say natural frequency?
Sheena (20:55):
Yeah, natural frequencies, yeah.
Laura (20:57):
Wonderful, wonderful.
Sheena (20:58):
And when you do use those as well, you should make them easy to compare. So if people are trying to compare two risks, so one way to do that is to use the same denominator. Now that's the second part of a natural frequency. If you're saying one in 10 people will get this side effect, don't then switch that on what people are comparing it to one in five, say one in 10 to two in 10. People know it's a direct comparison. It's hard to describe this verbally actually. It's one of those things where it'd be great to have an example to show, but again, it just comes down to making it as easy as possible for people to understand the risks or benefit information they're being given. Another thing that we recommend is to use what's called absolute risk rather than relative risk. So if you're given the relative risk, you might just be told for example, that your risk of a side effect doubles.
(21:55):
And that can be quite misleading if you don't have the actual number. So absolute risk would say the risk increases from one in 100 people to two in 100 people. And you can see how rather than being told it doubles, that might cause you to make a different decision because you've got that kind of base number to compare. And then the final tip is one that one of our members uses actually, which is the Royal College of Anaesthetists. And when they're presenting risk on going under an anaesthetic, produce this infographic where they put the risks relative to a real life situations, so the amount of people is equivalent to the amount of people on your street in a small town,
Laura (22:41):
Et
Sheena (22:41):
Cetera, then the risk was lower than being involved in a car accident. But just things that are more relatable for people rather than these abstract numbers. So that's another example of just something you might want to consider when people are presenting risk and benefit information in particular. So hopefully some of those will be useful to people.
Laura (23:03):
Yeah, absolutely. I love those tips and they all made sense to me, especially the point around communicating scale. And you said there, I think you said people on your street or people in your village. So one of the things that I struggle with as a disco qic is to accurately represent ranges and sizes so, so kind of visualising how many people live on a typical street or in a typical town, I can get my head around that. That makes sense to me. Wicked, I'm so pleased you've agreed to come on and share your insights and tips. I had a question around the health information that you see in GP surgeries and in hospitals and other medical centres that you might go into now. I actually snapped a photograph, and I might put this in the show notes of the notice board within the GP surgery.
(23:59):
And I was kind of doing it as a little study and I looked at the photograph afterwards and I was counting the number of posters and leaflets that I understood versus the ones that I didn't. And as I was going through the image, you could clearly see that there was no consistency to any of the information. And I think there's a assumption, I spoke to a few people and they told me they were a few people thought, oh, the NHS just sends out leaflets. The NHS will just send out batches of leaflets and posters to the GP surgeries and then whoever just sticks 'em to the notice board. And a few of the people told me that actually they themselves have done it before in the past they've been a doctor and they've had 10 minutes and they've been asked to do this poster on, I don't know, hearing aids or something like that, and they've put something together. So do you actually know who's responsible and who is likely to be putting this information on the notice boards?
Sheena (24:58):
So it does vary hugely. Like you said, there's this assumption that the national NHS produces all the information that goes out, but that's just not the case. So the national NHS does do big campaigns and also with the government department of Health and social care on things like for example, flu vaccinations, but then local NHS trusts will put out information if you're in a GP surgery or hospital, you're also likely to see information leaflets from specific health charities as well from patient organisations. So there isn't kind of a central repository of health information. Now at P, we think at the moment there's a lot of duplication of effort and that sometimes means that people can't tailor the information they're putting out to meet specific needs and to do the user involvement, which makes information more accessible. So we really recommend that people look for high quality information which already exists.
(25:57):
So this is the information providers we're talking about, and rather than duplicating information that's already out there, signpost to that information that exists, and then focus efforts on actually producing different information or information in different formats to make it more accessible. So for example, mind is one of our members, they produce a huge amount of mental health information. They do a lot of user involvement. So rather than each individual GP surgery producing an information leaflet on depression signpost to mind, so we recommend that. And actually we're just about to publish a big report called Knowledge is Power, which looks at the health information landscape across the UK and how people are being signposted to information. And we really recommend actually there is a more central approach to that core information so that local NHS trusts can really focus on areas specific needs within their area for their local information teams and also so that people can benefit from the huge range of really good quality information that is out there already rather than everyone trying to produce the same thing.
Laura (27:09):
Yeah, you can definitely see there was a cluster of leaflets around the same subject, but one was from 2017 and then they'd put an updated version next to it for 2023. And it was quite funny because there was a life size, what are those pull down things? Like a pop-up marketing?
Sheena (27:32):
Oh, like pop-up banner type
Laura (27:34):
Banner. That's it. Yeah, it was a six foot pop-up banner and it had an out drawing of a human on it. And then QR codes at various points in the, so there was a QR code for knee pain where the knee was and then the QR code on the head for headache. And I was just, I couldn't help but laugh. I was just thinking, wow, I wonder how many people, first of all would have a phone with the ability to take a photo of the QR code, but I dunno how many people understand what a QR code was. And it was just really funny, this outline of a human with just loads of 20 QR codes all over and I just thought, oh bless. That's someone's idea to kind of make information easier to consume. And I just wonder how well it goes down there at the GP surgery. You've made some awesome suggestions and I think pointing to existing information, especially for these big health organisations is such great advice and I wonder whether or not people think of that and if they don't, hopefully after listening to our conversation they will do that in the future. But yeah, the eclecticness of all these posters and things, it's interesting to look at and
Sheena (28:58):
Actually you mentioned about the dates on some of that information and that's something else we know there's really quite out of date information sitting in drawers that healthcare professionals are just referring to because it's there. But actually a lot of it might not be appropriate anymore. It might not even be relevant anymore if treatment pathways have changed. So we do recommend that health information is updated every two to three years and there should be a publication date on it so that people can see when it's being published, like you mentioned one there from 2017, we would be thinking that maybe that's time to update, which it sounds like they have, if they put the new leaf plant next to it, but maybe take the old one off the shelf.
Laura (29:41):
Yes, it was kind of on top but not quite covering the whole thing. I did wonder to myself, I wonder why they haven't removed the old one. I think, I dunno, I've just had another memory pop in years ago I was at a surgery and the GP handed me a form that I had to take somewhere, and I remember he got it from a draw and the form was so out of date he got a marker and crossed out loads of bits of information. This is wrong, this is out of date. But it seemed like he only had that one form. And I think what happened was they bulk download the form or print the form off, it goes into a drawer or something and the form is actually updated online or wherever the source is, but it never quite gets to the GP surgery. So they're using these out of date paper forms that are an old version and he must have marked 50% of it off like, oh, you just have to, it's just this bit we need. And he went through it. And I remember just looking at, I worked in content design, I think I'd just started in content design and I thought this would make a really good case study if it wasn't personal information, I could share this if it wasn't personal. But I think that probably happens quite often. Right,
Sheena (31:00):
Absolutely. And I think you're absolutely right. What happens is something gets produced and they print off however many copies and then because people don't want to be wasteful, it's like, well, we'll just keep using that until we run out. And we've spoken about some of the limitations of digital, but of course that is the advantage of digital information for people that it can be rapidly updated, but it's not always being used at the moment. And digital first shouldn't be digital only. So people that need paper resources should absolutely still be able to access them, but in some instances it makes sense to use digital because if there are ways to do that form and maybe just print off as you need it rather than printing off 200 and using it out of date. Also, some of those forms, the print qualities really poor, so it is actually really hard for some people to access them for different reasons. The font sizes can be very small as well. So there's not those options to customise in the same way things like font sizes that you can online now. So that's something else to consider as well.
Laura (32:02):
Yeah, paper document accessibility is so behind digital services and products and I think sometimes it's forgotten about. So you could have a beautiful online form with a duplicate paper version, but if you haven't updated the paper version, then those people who are using it kind of get a bad service and may struggle, like you said, for several reasons. As we're on the topic of forms, I don't suppose you have any tips and advice on writing medical questions or asking patients for information relating to their health.
Sheena (32:39):
Sure. So keep it simple would always be our first one. So don't ask multiple questions within the same question. So one question, one answer, remember that patients are people, so address them directly, make sure the language is appropriate in the same way that the information that you're producing should be using plain language and be accessible. The questions should be written in the same way or if you're asking 'em verbally, so use plain language, explain any medical terminology immediately. There is a tendency for people to just agree. So if for example, a healthcare professional says to someone, do you understand what I've just told you? They will say yes even if they don't. So there's techniques people can use things like teach back, which is when you ask someone to explain back to you what you've told them, and that can help to highlight if there are any misunderstandings and also avoiding those closed questions. So do you understand is a yes or no answer asking open question, so what do you understand from what I've told you or how do you feel about what I've told you? That kind of thing. So those are just a couple of things off the top of my head.
Laura (33:56):
Yeah, fantastic, thank you. Sometimes when I speak to someone in the medical space, it will either be something like the name of a medication or the name of a symptom, and it's like they just think you know what that means. And I remember having a discussion with, I think it was a pharmacist, and I gave them my prescription and she asked me are really obscure question around the prescription, and it was the first time of me getting this type of medication and I just was like, oh, I really don't know what you mean. And then she said something like, oh, it is okay, it doesn't matter. And I was like, what do you mean? Is this serious? What's going on? So I don't think it's an intentional thing, but I think sometimes, yeah, like you said, asking people to explain back to you what they've just heard from you and making sure that you are sure they understand. I think that's a really cool suggestion.
Sheena (34:55):
And I think that's a really good point as well, is that when you use certain language all the time, it becomes familiar to you and we are all guilty of it. So for example, I've worked in websites for many years and sometimes I'll say SEO and not explain that it means search engine optimization. And so for healthcare professionals that are talking about these medications or conditions day in, day out, that becomes their normal vocabulary and it's really easy to forget that for most people it's like a foreign language. So we just always say never assume, understanding, always check yourself and think about if the terms that you're using are actually understandable. And if you're producing written information or video or anything like that, it's always good to check with people who don't have expert knowledge on the condition that you're talking about, for example. So work with newly diagnosed patients or people that even just general population to kind of sense check that you're not using that really complicated terminology.
Laura (35:53):
And I've actually had some wonderful nurses and pharmacists who have really taken the time to read my notes back or because I'm really sort of medically anxious, I do tend to kind of say, can I just repeat this back to you so that I'm sure I've understood and they've been so generous and going, yeah, of course, let me hear it. Or if I'm taking notes on my phone, I sort of say, sorry, I'm not being rude, I just want to note down what you've said. And then I can show them my notes on my phone and they'll check. So I don't want to bash anyone who's in the medical space because some brilliant people who will take the time. And I think I'd speak to friends and I say, oh, I get my phone out and I write notes. And they've said to me, really, I wouldn't have thought of doing that. And I think there's some embarrassment or shame around asking for help or even just asking to check if you've understood something. So if anyone's listening and thinking, oh, I would never do that, please try it because it does make you feel so much better when you walk out of that appointment room knowing that you've had your understanding double checked I guess.
Sheena (37:00):
Yeah, and like you said, people don't want to take up healthcare professionals time. We all know that the NHS is under a lot of pressure, but actually taking maybe a minute or two to check your understanding and make sure you take your medication correctly, make sure when your next appointment is actually saves time in the long run. Because when people understand better how to take their medications, how to turn up to their appointments, what they need to do before an appointment, then it saves the NHS much more time because you're not getting missed appointments, you're not getting people turning up without the sample they need or the information they need. You're not getting people taking medication incorrectly and potentially having emergency hospital admissions. So that two minutes where you might think, oh, they're really busy, it's not a waste of time, it's actually saving NHS time in the long run.
Laura (37:46):
Oh, fantastic. Now as a kind of specialist in health information, is there something that as designers of services could consider at the very start? So before we're working on service or anything, do you have any advice for how to consider health information right from the very beginning?
Sheena (38:05):
I would just always say start with the users. So no matter what you're producing, never make any assumptions about what people need or want. Start with the users, really work with them and then test with users as well. So for example, the data visualisations we were talking about earlier on, it can be really tempting sometimes to make something that looks beautiful but doesn't necessarily meet the needs of your users at all. I think with health information as well, there's a lot of sensitivities. So actually not just looking at the nuts and bolts, this is in plain language, but is it appropriate language? And again, working with users will help you identify those issues straight away. So that would always just be my first tip. Work with the people that you're trying to reach or the people whose behaviour you're trying to change and listen to what they say and actually action based on what they say because there's nothing worse than doing user engagement and then ignoring what the users have asked for.
Laura (39:05):
Yeah, absolutely. 100% do user research. Kudos to the user researchers out there who have to do user research on these really complex and often emotional topics as well. I know a few people working in the healthcare space and they are lucky enough to receive help in the form of counselling from their employer, which is brilliant because the services that we produce and create has an impact on us personally as well. So always take care of yourself. If you're working on really complex traumatic services or subjects, take time for yourself, make sure you've got support around you as well.
Sheena (39:46):
I think I would add, based on what you were saying, it's okay if things aren't perfect first time. We recommend continuous user testing throughout. So maybe you create something and you think you've really met what the user asked for, and then you take it to user testing and actually it's not quite right and that's okay. People can be quite nervous about starting user involvement. They see it's quite intimidating or costly or timely, but we've got this kind of motto of starting small is better than doing nothing at all. And generally if the intention is good and you do then act on the feedback you get, it doesn't matter if it's not perfect first time or even second time or third time. PS works on projects where we've gone through many iterations to get it right and you're not necessarily going to make it perfect for everyone because it's really hard and everyone's different, but you can make it as good as possible for as many people as possible. Or if you are trying to reach a specific group of people that have maybe been underserved, really meet their needs for that particular project.
Laura (40:49):
Great advice, thank you. Was there anything we didn't discuss today that you think people should check out?
Sheena (40:55):
So we're very excited about the knowledge is power report, which is coming out. So just going to give that a little plug. We've got some really interesting data which backs up a lot of what we've been talking about today. So one in 10 people that we surveyed in this project have been personally affected by misinformation.
Laura (41:15):
Can you just define what you mean by misinformation in this concept, that context, sorry.
Sheena (41:20):
Sure. Misinformation is just really information that is incorrect around, and we've seen a lot of it in health, particularly since covid. It is different to disinformation. So disinformation is when someone's deliberately misleading. Misinformation is just information that's incorrect. And quite often people that share misinformation aren't doing it of any malice, but unfortunately it can be really harmful. So yeah, we've seen one in 10 have been personally affected by that.
Laura (41:51):
Could you give me an example of misinformation as it really relates to health?
Sheena (41:57):
So a really common one can be stuff about treatments and things that do or don't work and people kind of sharing missing or vaccines is an area that really comes up a lot. There's a lot of misinformation out there and disinformation about vaccines actually. And unfortunately because of that, there's a lot of fear around vaccinations and that can affect uptake of, we saw it during Covid and we see it with the childhood vaccinations as well, but it can be really simple things. Small things can undermine trust. And what we've seen is misinformation can really undermine trust in organisations like the NHS. So again, going back to Covid, there was disinformation about hospitals being empty and that led to people not engaging with the measures to help keep everyone safe and also distrusting healthcare professionals who were there to help them. So misinformation can be really dangerous and it can also have a big personal impact. So there was a survey a couple of years ago now where lots of young people said they get their health information from TikTok, but they'd also been harmed by the information they found. So there was a big thing about contraceptive misinformation on TikTok a while ago. So young people maybe not taking traditional contraceptives and ending up in situations that they didn't want to be in because of that. So yeah, there's lots of different examples out there.
Laura (43:32):
Thanks a lot for sharing those. That was really helpful. I think it's not the first time I've heard of people using social media, TikTok, Instagram for solutions to their problems. It's got a lot to answer for, I would say.
Sheena (43:49):
Yeah, I mean, I would say that we are also seeing NHS Trust Health charities using those platforms to reach people that they wouldn't normally reach with information, but it's helping people to recognise trusted sources versus someone who's just putting information out there based on maybe their experience. So we do have advice on the PIF Tick website to help people swap misinformation online and to find trusted health information. So we'd say look for, is it evidence-based? Is it up to date? Has it been shared by a trusted source like the NHS or a health charity? Has it got the P tick, which is our verification mark, obviously, and again, in the research we're just about to publish. We've found that two in three people actually feel that an independent verification mark would increase their trust in health information. So yes, those channels, they can be useful to reach groups that perhaps haven't been reached with traditional health information, but it's about making sure that people know how to recognise and also the social media channels themselves taking responsibility for promoting those trusted sources and removing misinformation and disinformation from their sites as quickly as
Laura (45:01):
Possible. Yeah, rightly said. Can I just ask you what the PIF tick looks like for anyone who's unsure?
Sheena (45:08):
Sure. So very imaginatively, we went with a big green tick and it says trusted information creator as well. So maybe I could send you the logo and if you wanted to put it in the show notes so people could see,
Laura (45:24):
I think that would be helpful. Yeah, so it's a big green tick with some words underneath.
Sheena (45:29):
What does it say again? Sorry. So trusted information creator.
Laura (45:33):
Where can people find you or find out more about the Patient Information Forum?
Sheena (45:37):
For the Patient Information Forum as the main organisation, there's our main website, which is pifonline.org.uk. We also have the PIF tick site, which is public facing and has some of those resources I mentioned about misinformation and disinformation and also resources for healthcare professionals to help with that signposting to trusted information. We've got the PIF Tick directory on that site as well. We're also on LinkedIn and YouTube, so those are our main channels.
Laura (46:05):
Wonderful. Well, it's been a real pleasure to talk to you. What an interesting and important topic to discuss, not only because of the number angle, but I think anyone creating health information generally will get a lot from our chat today. So I just want to say thank you very much for joining me and take care. Thank you very much. It's been great. If you think you might have dyscalculia or maybe you've been recently diagnosed, you can find help and advice for children and adults on the Dyscalculia Network, search Dyscalculia network, or visit dyscalculia network.com. If you want to work with me and make the numbers in your service accessible. Visit lauraparker.design. Big thanks to Steve Folland for editing and producing this podcast.