Patient Community
Patient Community | 15
Robert , 73 Isha, 38 Susan, 56 June, 66 Michael, 64 Aamir, 74 Rebecca, 52 Marsai, 26 Jenn, 39 Dev, 54 George, 94
Patient Overview | 16 Demographics High income Highly educated Less educated High tech proficiency Low tech proficiency Low income Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Behaviours Serious Long-term Short-term High complexity Low complexity Minor High PIL engagement Low PIL engagement Always adherent Never adherent Condition High literacy Low literacy Health Literacy (NVS) 6 A A A A A A A A A A A B B B B B B B B B B D C C C C C C C C C C C B B A C D E F H G I J K D D D D D D D D E E E E E E E E E F F F F F F F 1 E G G G G G G G G G G G 5 H H H H H H DE F G H H H H H I I I I I I I I I I I J J J J J J J J J J J K K K K K K K K K K K 2 C F J A D 34 B I K F F F HPatient Overview
Priority Solutions | 17 Priority Solutions Always Sometimes Often B A C Compliance Robert Isha Susan Often Always Always E D F Aamir June Michael Always Often Often H G I Rebecca Marsai Dev Often AlwaysK J Jennifer George Rarely reads Sometimes reads Rarely reads Engagement Often reads Rarely reads Often reads Sometimes reads Sometimes reads Rarely reads Always reads Never reads 3/6 4/6 5/6 Literacy 3/6 6/6 5/6 6/6 2/6 4/6 5/6 4/6 M Richard O N P Rose Nic Fran R Q S James May Heather Always Rarely reads 5/6 Always Always reads 5/6 Always Rarely reads 4/6 Always Often reads 5/6 Always Rarely reads 4/6 Always Always reads 4/6 Always Always reads 5/6 A&T / PDF / Video PDF / Video Video Preferred Format A&T / Cust. / Video A&T / PDF / Video Video A&T / Cust. / PDF / Video A&T / PDF / Video A&T / Cust. Video Cust. PDF Cust. / PDF A&T / Cust. / PDF A&T / Cust. A&T / PDF A&T / Cust. / PDF App / Email App / Email App / Website Preferred Channel App / Email / Chatbot Email / VA App / QR / Website App / Chatbot / VA App / Email App Email / VA App / Email App / Email / VA App / QR Email Email Workshop x7 ppl Interviews x11 ppl A&T - Audio and Translation Cust. - Customisable Label QR - QR Code Reader VA - Voice Assistant Legend
Compliance
complexity
Product Information Engagement
Health Literacy
Read
PIL sheet
Robert revisits the PIL sheet when prescribed a new medication, but not on recieving a repeat prescription.
The expectation being, that if a change was made he would expect the GP Pharmacist to contact him directly and alert him to the change and the impact.
• “Ring me up and talk me through it, that’s what would expect ... that could be done by telephone, text or anything you know.”
PIL Pain Points
• “The size of print is so small that it strains my sight ... I would need to have a magnifying glass.”
• “Do you really want to know what the side effects are, because I think if you read all of them for all the drugs, you’re going to get depressed, have a little bit of anxiety and I would rather do without that so I don’t read it.”
• “ wouldn’t be bothered if the PIL sheet was
from the pack.”
Management Tools
I want to
• “I thought a 6 or 7 ... because I don’t read the inside jargon so I don’t know what
are actually in the
and I don’t want to know particularly.”
“If my GP says this is what you need to take, I go, ok this is what I need to take. I think you have to believe in them, because they are the best at their job.”
“That’s [NVS] never easy without a calculator. It’s no wonder people don’t look at labels isn’t it.”
Check
F1 - In the first few years after new medicines
can be
more than 10
more
every
of 60 million, it’s not very much is it.”
of UK citizens find it very difficult to understand
I thought it would have been more, nearer the 80% mark.”
After
for a long
especially the
I would go to Right Breathe and read up about it. I actually quite like it because it has
that show you how to
1/3 of
are not taking it as
it just means that there needs to be a
the
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Tablets / x2 Daily / AM & PM Capsules / x1 Daily / AM & PM Inhaler 3 in 1 / x1 Daily / Mornings
“ don’t have any problem in taking my medications as and when I should. They are very nicely packaged, because they are in strips of seven, so you know which day you start, so you know if you have taken them or not, that’s my logic. Digital reminders to take medications are useful but can be ignored so not always 100% reliable.”
“ always take them. I see very little point in not following the clinical advice that I am given as it is for my benefit and enables me to lead as normal a life as is possible. I’ve never missed one yet, in nearly ten years.”
“Whenever there is a change in my meds I always use the NHS website.” “If
know
about the drugs,
inhalers,
videos
use
medication.” •
•
removed
is 73, a retired financial controller, currently volunteers and lives in West London. High School Lives with spouse £35k - £55k High tech proficiency Mobility issues English-first speaker Behaviours Serious Long-term Short-term High complexity Low
Minor Always read Packaging Read in full Rarely read
in part
chemicals
product,
•
•
Fact
Alternative Sources •
become available, the label
updated
times. “Not surprised, I would not change my behaviour ... I trust my healthcare professionals.” • F2 - More than 92k patients are hospitalised
year in the UK due to adverse drug reactions to medicines. “Not surprised, out
• F3 - 66%
health-related information. “Surprised,
• F4 -
ten days taking a new medicine
term condition,
people
advised. “Very surprised,
lot more education done.” Robert 6/10 Self-assessment 3/6 NVS results -10% Discrepancy 1/2 Patient Profiles | 18
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“Doing it electronically it opens up a lot of different things... we’ve got a very diverse population so you could translate into different languages and that sort of stuff.”
“There is a problem for people who don’t have reading or writing skills, it’s got to be visual... you know if you give a picture to somebody regardless of how clever they are, its better.”
“The first time I saw it [Right Breathe videos], was in front of a load of people in a group meeting, and we just tried it out and people went ohhh that’s good! When you consider that these are people in their 70s and 80s, they are not the modern day ‘we can do everything’ IT-wise people, they were impressed, that says a lot!”
“I believe and accept that better use of technology is a must and it, possibly, would be useful if when a medication is issued for the first time that the details on the inner packaged leaflet should be sent by email in either a word or adobe file to the patient. Similarly if the information on the leaflet is changed an updated version should be sent.”
“Well I just think if it was sent, you could keep it and would only need the one document, because every time you get the pack, you get another leaflet and another leaflet and another leaflet and you get a bit blasé about not bothering to read them don’t you. If you had it there in front of you from day one to always go back and look at it, what could be simpler.”
“It’s not a big idea is it, it is a logical idea, that’s the thing, and yes suppose if you go on, like I do, I order all my meds electronically, all it needs to have is that little button with the ( ) in it for information and if you want to click on it you can click, it’s as simple as that.
Electronic is the way forward, it’s not for everybody but if you can get the majority to use it then I think it would be a winner.
It may even as you say give you the link over to Right Breathe if it’s an inhaler so you can get the education on how to use it, because we all know that 90% of inhaler users don’t use it properly, any little bit helps doesn’t it that’s the thing.”
“I do use them, but I don’t like them, I feel as though I’m talking to a robot not a person, and I probably am talking to a robot. It’s nowhere near smart enough, it doesn’t think.”
2/2 Patient Profiles | 19
Product Information Engagement
All I want to know is how it’s going to affect me or if there are any side effects.”
• “After taking the medication
a
• “The side effects most of them are similar so I feel it’s just a waste of your time.”
• “The
are really big ... 2-3 pages, with really small writing.”
Sources
what the medication is going to do and how many I need to take. That’s why I will say understand 9/10 and because I take
from 2016 regularly.”
• “When you go to the GP ... they don’t give you anything. If you go to the pharmacy, they just let you know the effects and the dosage and if you already take it, then they say you know already.”
Fact Check
F1 - In the first few years after new
become available, the label can be updated more than 10 times.
“I’m surprised, I would read it, but I feel like it should look a little bit different ... so you feel it is different.”
F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines.
“Not surprised, people will not read the information ... when you are busy, working full-time, a full-time mum or anything, you don’t have a lot of time to read the label.”
F3 - 66% of UK citizens find it very difficult to understand health-related information.
“Not surprised, When you go to the GP you have only ten minutes, so I say more like 80% do not understand.”
F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised.
surprised, I don’t take mine like the GP says.”
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Tablets Capsules Inhaler Management Tools “ put a reminder on my mobile and I also have my daughters and my husband who all remind me ... I feel if you’re busy, you just turn alarms off. My husband is a diabetic so he takes medication regularly. He remembers himself and then he tells me to take my medication.” Compliance • Isha ‘sometimes’ takes her medication as prescribed. • “ regulate them myself as the doctor prescribes it morning and evening, but I don’t want to be sleepy all day ... It depends on the pain that day.” Health Literacy “When you don’t understand something, you can’t go back to the GP or pharmacy ... sometimes I go on Google and search and it gives most of the answers you need. I do this most of the time.” “I have a friend who is a doctor [NHS], so sometimes I go to them.” • Isha would revisit the PIL sheet if: - A new medication is prescribed - She were to experience any side effects - She didn’t see any change in condition - She were prescribed additional medication • Isha does not revisit the PIL for repeat prescriptions. • “I’m not going to say I never read it because sometimes when I have time I will ... I normally read the first 3-4 parts and that’s it.
leaflets
PIL Pain Points is 38, works in retail part-time and lives in East London. Bachelors degree Lives with partner and four children £15k - £35k High tech proficiency Mobility issues Bengali-first speaker Behaviours Serious Long-term Short-term High complexity Low complexity Minor Always read Packaging Read in part Sometimes read PIL sheet Read in part
for
while you understand
medication
Alternative
•
medicines
•
•
•
“Not
Isha Spray Drops Suppositories Injections Creams 9/10 Self-assessment 4/6 NVS results -23% Discrepancy 1/2 Patient Profiles | 20
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“I feel like if it came from your GP ... or some information in a GP Hub to talk to patients. When you do something like a hub, it reaches a lot of people who can’t speak English, or read and write.”
“I feel like any new label you need to put the change on the top ... you can just put one line or change the colour on the label to differentiate so people know someone has worked on it ... if people don’t have interest, they will read at least one line.”
“Video will be better than audio, because visually when you see something it is on your mind. When the doctor prescribes the medication to the patient, they can send the link to the patient.”
“You can send it by email too, but a lot of people don’t use email or any internet, still now I would say.”
“[Linking to the NHS App] Could be helpful yes, with my history of health so it is more accurate.”
Video will be better than audio, because visually when you see something it is on your mind.
2/2 Patient Profiles | 21
Minor
Product Information Engagement
Health Literacy
Read
complexity Low complexity
Packaging
Behaviours
Compliance
‘often’
because I
Management Tools
I
if
I ‘should’
I
at eight
PIL sheet
• Susan would revisit the PIL sheet if she were to experience any side effects but does not revisit the PIL for repeat prescriptions.
• “ assume that nothing has changed on the information sheet, but maybe it has and I wouldn’t know because I don’t read it ... I’ve no idea if it has changed in twenty years.”
• “ do not keep the outer packaging or the PIL sheet.”
PIL Pain Points
“Who really is going to sit down and read this ... there’s too much.”
• “With my autism ... to see something this size is just straight away overwhelming and I just wouldn’t bother. It just feels like a legal requirement.”
• “There’s a whole list of side effects ... I don’t think it is always helpful to read them.”
• “Removing the PIL would be fine for me - save a few trees - as long as I knew that wherever I was getting the information from was up to date and accurate all the time.”
Alternative Sources
• “I don’t take stuff in very easily . . . I don’t grasp things terribly easily . . . apart from the side effects none of the rest of it means anything to me, really.”
• “If I didn’t understand, I wouldn’t ask my GP, my automatic thought would be well they’re just too busy. And the pharmacist, I just pick them up at Tesco so there’s no kind of relationship there at all. If I went to a little independent pharmacy there might be.”
Fact Check
• F1 - In the first few years after new medicines become available, the label can be updated more than 10 times.
“I need them to highlight what the change is. Even if I read it word for word I wouldn’t know what was new.”
• F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines.
“Surprised, that’s scary and what an expense for the National Health Service!”
• F3 - 66% of UK citizens find it very difficult to understand health-related information.
“Not surprised, because it’s so flipping complicated and we don’t necessarily get things explained to us in a way that we might understand and I’m often too ashamed to admit that I don’t understand what’s being said to me.”
may do
on the
if necessary. I would Google because it’s quick and if I want to know something I want to know it now.”
• F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised.
“Surprised, I thought it was only me.”
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Tablets / x3 Daily / Evenings Tablets / As and when needed Tablets OTC / x3 Daily / Evenings
“Even with an alarm on my phone
would still forget to take them ... so I just thought
on a Sunday,
just put them in here [pill caddy] and tip them out on that particular day and swallow the lot all in on go. I keep the caddy next to me in the lounge because
take it
o’clock every evening.”
• Susan
takes her medication as prescribed. • “ didn’t choose ‘Always’
sometimes forget to take my medication.”
“I
research
internet
•
is 56, freelances part-time and lives in South East England. High School Lives alone < £15k High tech proficiency Autistic English-first speaker
Serious Long-term Short-term High
Rarely read
Read in part Rarely read
in part
Susan 3/10 Self-assessment 5/6 NVS results +53% Discrepancy 1/2 Patient Profiles | 22
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“So yeah perhaps have a sheet with all this information on with a link to a website where you can just search ... not just any old website it’s got to be trusted, where it’s up to date and it’s accurate. NHS would be the only one I would trust, but again is it always up to date, is it always accurate, I don’t know.”
“I like all of those [different formats], I think it’s important that there’s a choice because one size doesn’t fit all does it, so you can choose whichever method you want at the time. I think video would work for me.”
“Just give me a link to a website ... a searchable website so you don’t have to read all of the information, but that would mean people who don’t have access to the Internet or don’t have the technology to access the internet ... that would obviously cause a problem there, so maybe a choice.”
“Fabulous ... like what I’m hearing, yeah as long as it’s [App] secure and unhackable, that’s so important.”
I think it’s important that there’s a choice because one size doesn’t fit all.
2/2 Patient Profiles | 23
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Tablets / As and when Spray / Daily / As and when Drops / As and when Management Tools “None.” Compliance “ take my medicine as and when to relieve pain.” Health Literacy “NHS is a reliable source of information... if it is a new medicine I want to check against my other medications.” “Google can be terrible... I am wary of this information or other search engines. It is better to read the leaflet.” • Aamir would revisit the PIL sheet if: - A new medication is prescribed - He were to experience any side effects - His health were to deteriorate - He wasn’t seeing a change in his condition - He were prescribed additional medication • Aamir does not revisit the PIL for repeat prescriptions. • “I don’t read all of it... maybe it is laziness on my side.” Product Information Engagement • “Sometimes too much information, especially on side effects which are triveal.” • “Ingredients are hard to understand... too many tricky words.” PIL Pain Points is 74, a retired transport engineer and lives in North London. Masters degree Lives with spouse Preferred not to answer Mid tech proficiency English-first speaker Behaviours Serious Long-term Short-term High complexity Low complexity Minor Often read Packaging Read in part Often read PIL sheet Read in part • “If it has been approved by my GP, I presume he knows what I am taking.” • “I can’t fully understand it because I don’t read all of it.” Fact Check Alternative Sources • F1 - In the first few years after new medicines become available, the label can be updated more than 10 times. “Surprised... but suppose everybody reacts differently.” • F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines. “Not surprised... out of 60 million.” • F3 - 66% of UK citizens find it very difficult to understand health-related information. “Not surprised... people don’t read all of the information, they just want to read a paragraph.” • F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised. “Not surprised... a lot of people want to wait and avoid medicine to see if they can get away with it.” Aamir 7/10 Self-assessment 3/6 NVS results -20% Discrepancy 1/2 Patient Profiles | 24
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“Yes, I support translation and text-to-speech is very useful for blind people.”
“For those who can’t grasp the language, that would be very useful. Where procedures are complex, video would help.”
“I do like this idea of customisation... it would allow you to focus on the important bits.”
“SMS is too much to read, but email might be doable... that may help people to look at it.”
“Integrated App - That could be good... I go online with my laptop - not on my mobile - to book my prescription online. If the integrated app could get feedback from the GP or pharmacist... to have a both ways communication would be good.”
“I’m not sure about a chatbot... they are very restrictive and go round and round and I just want to speak to a real person.”
Priorities would be customisation and making the PIL more visual... and I don’t mind chatbots if well presented.
“I don’t mind chatbots just in case I need further information as long as the chatbot is well presented. Initially it won’t be and it will take time to make it better... if they can make it more smart... I would like to see the technology improved.”
2/2 Patient Profiles | 25
East of England.
Compliance
Management Tools
Product Information Engagement
Health Literacy
PIL Pain Points
into such tremendous detail... you could convince yourself of anything.”
• “The size of the type is tiny and I have really good eyesight! So anyone who wears reading glasses they just won’t bother.”
• “The typeface is faint and on poor quality paper, it needs to be bigger and have a better contrast, I don’t know how they get away with it really. People with dyslexia have no chance!.”
Alternative Sources
• “I will do what the GP says... you feel like you are running in, blurting out whatever it is and running out again. I’m pretty good at understanding stuff, but I don’t think it is all relevant.”
• “I don’t know if I feel better informed from reading it... what are the long-term effects? Are there any that affect older people more than younger people. How long should I take this for?”
Check
• F1 - In the first few years after new medicines become available, the label can be updated more than 10 times.
“Very surprised... I always got the impression once it passed regulation that was it. I haven’t read mine for ages, maybe six or seven years ago!”
• F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines.
“Not surprised... not that many for the population.”
• F3 - 66% of UK citizens find it very difficult to understand health-related information.
“Not surprised... do a little bit of volunteering for a credit union and I am astonished at how many people cannot read the simplist things... it is scary.”
F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised.
surprised... goodness really! What’s going on then!”
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Tablets / x2 Daily / Mornings before food
“ set a seperate digital reminder on my phone to make sure I take them... when I am home they are right next to me on the nightstand.” “A major problem is remembering to go to collect the prescription even though I order online I still have to remember to do it and go for it.”
• June ‘always’ takes her medication as prescribed. “ know how I feel if I don’t take it. There was one year we had snow and I couldn’t get out to get my prescription and three days without it I was really not very well.”
“NHS patient info online because it is a filtered and checked source.” “UK Thyroid Association.There’s specific information on there around testing. There’s a forum and Q&A on there which is good.” • June would revisit the PIL sheet if: - A new medication is prescribed - She were to experience any side effects - She were prescribed additional medication • June does not revisit the PIL for repeat prescriptions. • “GP specifise the dosage which is attached by the pharmacist to the pack so I read that and ignore the rest.”
• “If you read the internal stuff, it terrifies you, and it goes
is 66, runs two businesses and lives in the North
Doctorate PhD Lives alone Preferred not to answer High tech proficiency Dexterity issues English-first speaker Behaviours Serious Long-term Short-term High complexity Low complexity Minor Sometimes reads Packaging Read in part Rarely read PIL sheet Read in part
Fact
•
“Very
June 8/10 Self-assessment 6/6 NVS results +20% Discrepancy 1/2 Patient Profiles | 26
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“That’s essential for lots of people isn’t it, how are people coping. It is shocking!”
“Even if it was just really simple, a PDF that you can make bigger or smaller would be fantastic! Text-to-speech would have been really helpful when I was having eye problems and couldn’t see very well. Really good for a lot of poeple.”
“I’m not a very visual person, I like to read things so it wouldn’t appeal to me, but of course it will appeal to a lot of people because it is a learning style.”
“I think educational videos are helpful, but only if they are going to be useful, because some are so generic, you feel like it’s a waste of time.”
“My friend has arthritis and the specialist website she uses shows little videos and illustrations of exercises that she can do to improve her condition... she watches and prints them out and follows a little routine.”
“PDF sent via email appeals to me the most.”
“It doesn’t appeal to me, I can see why people would... I think a systematic tool would take over too much of my life. I didn’t use the NHS app but do use the GP website for ordering. Tesco [pharmacy] will text to say your prescription has arrived and your batch of prescriptions is about to run out.”
“I don’t like chatbots personally... I’m not interested in them... I find them irritating popping up at the side of the screen all of the time... If wanted to interact maybe different, the random ones are annoying!”
“I do have one... just haven’t linked mine to my diary but I could... partly I haven’t because of my deep seated suspicion around big-tech data.”
Priority would be a PDF as you can activate audio, make it bigger and move things around.
I’m going to surprise myself and link to a voice assistant because I have that and when I get round to it I might do that!
2/2 Patient Profiles | 27
Fact Check
“Not
Alternative Sources
scary
people think they
take it as
want to
this
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Tablets / x1 Daily / AM Management Tools “None. If I am going on holidays I might use a pill caddy for my prescription tablet and OTC tablets and I will sometimes set alarms.” Compliance “ always take them to remain well.” Health Literacy “I’m quite careful where I look for information. The pharmaceutical company website for a new medication.” “Google brings up weird and wonderful websites with crazy conspiracy theories around medication... people have to understand what is a credible source.” • Michael would revisit the PIL sheet if: - A new medication is prescribed - He were to experience any side effects - His health were to deteriote - He didn’t see any change in condition - He were prescribed additional medication. • Michael does not revisit the PIL for repeat prescriptions. Product Information Engagement • “Too much medical jargon.” • “There’s just a lot of it... it should be colour coded to encourage people to pick it up.” • “Removing the PIL would be no problem as long as there was a QR code on the box, but it might not suit everyone.” PIL Pain Points is 64, works part-time in the charity sector and lives in the North East of England. Masters degree Lives alone £15k - £35k High tech proficiency English-first speaker Behaviours Serious Long-term Short-term High complexity Low complexity Minor Always read Packaging Read in full Often read PIL sheet Read in part • “I understand what I am reading but I don’t read it all.”
• F1 - In the first few years after new medicines become available, the label can be updated more than 10 times. “Very surprised... I wouldn’t have thought at all. It might change my behaviour because they are doing research and getting feedback.” • F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines. “Not surprised... because more elderly patients take more medication... consider dementia and water infections and they can get easily confused and take 2 doses or miss 2 doses... I would say that could easily happen.” • F3 - 66% of UK citizens find it very difficult to understand health-related information.
surprised... sometimes ther’se jargon that people don’t understand and then the media publish
stories...
don’t
take
medication anymore...
gospel.” • F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised. “Very surprised... maybe it doesn’t fit with their routine.” Michael 8/10 Self-assessment 5/6 NVS results 0% Discrepancy 1/2 Patient Profiles | 28
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“That’s probably on par with the PIL sheet, not necessarily and better or worse.”
“Additional - If they had a QR code and a better version of the PIL, with colour, a synopsis... and it takes you to a website page, that is a quick fix!”
“Yea think it is a good idea, you’re more likely to take notice and it will have more impact than reading a long list... more likely to take it in.”
“I use the NHS app, my Covid passes are on there. One platform sounds like a good idea. At the moment have an alarm but if you’re in a meeting you snooze it and forget to take it, you need something that nudges you and you can click yes you have taken it.”
“I don’t generally like them... you are not speaking to a human... the only time I have used them I didn’t get the information I needed so I woudn’t put my faith in a medication one.”
One platform sounds like a good idea... you need something that nudges you and you can click yes you have taken it.
2/2 Patient Profiles | 29
Minor
Product Information Engagement
Health Literacy
complexity Low complexity
Packaging
Sometimes read PIL sheet
Read in full
Compliance
Management Tools
PIL Pain Points
so much on
• “I still don’t know what is in this patch. I’m not stupid, I just don’t get it. There’s so much in it... possibly I don’t know what I should be taking on board.”
• “I have a really good GP... she was very specific and thorough. maybe if I had a different GP experience... I might need to rely on this more mightn’t I.”
is
so it
every type of
from 25 up to 100ml, it is all on
So you need to
that applies to you. It is
Fact Check
the
it is
am on the lowest dose... I’m sure the risks are less for 25 than 100, but that isn’t really covered in here.”
• “I wish it was more specific to me... this label is to make their [drug company] life easier... to cover all aspects with one print.”
• “There is so much of it and it is very technical.”
• “It’s slightly threatening... it’s not very reassuring... it is all quite negative in the way that it is worded.”
Alternative Sources
• F1 - In the first few years after new medicines become available, the label can be updated more than 10 times.
“Not surprised, because that is my understanding of it going into widespread use and having more data fed back to the drug company.”
• F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines.
“Not surprised, having witnessed what my mum went through. Surpised it is not higher actually, but it is worrying that’s the case.”
• F3 - 66% of UK citizens find it very difficult to understand health-related information.
“Surprised, that’s a really high proportion.”
• F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised.
“Very surprised, a third is scary. A lot of work to be done!”
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Patches / x2 weekly
“Digital reminders... use my phone for everything.” “The packaging has a handy guide which helps me to remember when to change my dose... I swim on those days so it fits with my routine.”
“ always take them. It’s my body and my health. I am in charge of taking my medicine properly. Only one or two days where I have forgotten and that was early on. I am really busy, I have got a full-time job, two kids, lost my mum... you can get overwhelmed.”
“Internet, it’s quick and efficient.” “NHS is one that I will always go to... I use it a lot for validation because I trust it, it is updated regularly and it is not-for-profit.” “Specific drug company information and my friends and peer group.” • Rebecca would revisit the PIL sheet if: - A new medication is prescribed - She receives her repeat prescription - She were to experience any side effects
• “There’s
there... it is massive. It
generic
covers
dosage
here!
select
information
huge,
enormous.” • “I
is 52, works full-time as a purchaser and lives in the North East of England. Bachelors degree Lives with spouse and children £75k+ High tech proficiency English-first speaker Behaviours Serious Long-term Short-term High
Often read
Read in part
Rebecca 3/10 Self-assessment 6/6 NVS results +70% Discrepancy 1/2 Patient Profiles | 30
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“Completely necessary.”
“That’s a great idea and it come could from your GP or practice nurse. Certainly in my day-to-day life I have to help people to understand data... I use a variety of tools, different fonts, colours and seperation so it is more punchy... visual cues can make a big difference!”
“I think it depends... you’ve got to be careful because they [icons/images] can get too small and then you can’t see them... depends on the medication.”
“I think that is a great idea.”
“That’s the best one so far, definitely full backing for this idea... making it more customisable.”
“Accessed via the phone and having someone or something to ask questions of...team the chatbot together...where you can ask questions.”
“Brilliant idea that one.”
Customisable PIL definitely and the PDF PIL you could do straight away.
Phase two... probably a smart chatbot so you could ask questions along with the educational videos.
2/2 Patient Profiles | 31
Sources
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Tablets / x1-2 Daily Capsules / x1-2 Daily Management Tools “None. If I had a more serious condition I would be more strict with my medication.” Compliance “ often take it. I prefer natural remedies over medication to manage my condition. When my condition is worse, I will tend to take my medication 1-2 times per day.” Health Literacy “I use the NHS website and Google but the information is generic.” “Social media platforms, blogs, articles, journals... are more personal with people’s reviews... use them to see what has been working for them.” • Marsai would revisit the PIL sheet if: - A new medication is prescribed - She were to experience any side effects - Her health were to deteriorate - She wasn’t seeing a change in her condition - She was prescribed additional medication • Marsai does not revisit the PIL for repeat prescriptions. • “ just pick out the bits I need to know.” Product Information Engagement • “It’s quite small print. Some of the language might be a bit hard to understand, comprehensive text.” • “Not everything applies to me (pregnant / breastfeeding).” PIL Pain Points is 26, a full time worker in the transport sector and lives in Central London. Bachelors degree Lives with parent and sibling £35k - £55k High tech proficiency English-first speaker Behaviours Serious Long-term Short-term High complexity Low complexity Minor Often read Packaging Read in full Sometimes read PIL sheet Read in part Fact Check Alternative
• F1 - In the first few years after new medicines become available, the label can be updated more than 10 times. “Surprised to learn that.” • F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines. “Not surprised, people react differently and people might have health conditions or allergies.” • F3 - 66% of UK citizens find it very difficult to understand health-related information. “Not surprised, the information is so condensed and uses health related terms that people don’t know the meaning of... visually impaired people might not read the information or misinterpret it.” • F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised. “Very surprised... but if it is multiple pills a day they might make a mistake... or if they depend on a carer to help administer the medication.” Marsai 7/10 Self-assessment 2/6 NVS results -37% Discrepancy 1/2 Patient Profiles | 32
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“I think text-to-speech and translation is really good... some people are neurodiverse and can’t read english very well.”
“Make the writing bigger, bold and higlight key information, maybe different use of colours to make things more clear and stand out... draw people to key information quickly.”
“Good for people who have to administer medication themselves, or if they are alone or elderly.”
“PDF sent via email... everyone is on their phone these days so this would allow them to access it easily.”
“I think this all sounds really good.”
“Feels like you are talking to a robot not a human... you recieve automated answers and they are not really able to answer your query so it can be a waste of time. In a few years time maybe, but not now no.”
Everyone is on their phone these days, so a PDF sent via email or an app would be great for people.
2/2 Patient Profiles | 33
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Management Tools “None. I know when I need to take it.” Compliance “ often take them. If I am out and don’t have access to my medication or if I travel, I just take it at the most convenient time... just lifestyle really. I do tend to forget, I try to make it up or I miss the dose, but it happens rarely.” Health Literacy “I would Google search to find information as I am digitally connected, but I am aware of lots of communities and individuals who do not have that level of understanding.” “I would speak to friends and family to verify information.” • Dev would revisit the PIL sheet if: - He were to experience any side effects - His health were to deteriorate • Dev does not revisit the PIL for repeat prescriptions. Product Information Engagement • “I find these very confusing and often too technical or clinical which makes little sense to me. For a non clinical person it doesn’t make much sense. It is not very engaging or helpful.” • “It is in too small a print for me to easily read.” • “Generally too long and goes into lots of details... I tend to switch off and think it is not really relevant for me.” • I understand from a legal point of view they need to be written in this style with comprehensive information and written in multiple languages... they are trying to put everything in one leaflet.” PIL Pain Points is 54, a full-time worker in public services and lives in Central London. College Lives with partner and children £35k - £55k Mid tech proficiency Multiple conditions Bengali-first speaker Behaviours Serious Long-term Short-term High complexity Low complexity Minor Always read Packaging Read in full Rarely read PIL sheet Read in part • “Absolutely trust my clincial team, if I didn’t I would be arrogant or stupid... to not take their advice.” • “Health literacy in my community is probably below the national average.” Fact Check Alternative Sources • F1 - In the first few years after new medicines become available, the label can be updated more than 10 times. “Surprised, purely because we have MHRA but I do understand that lived experience of medication being used... they might find things.” • F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines. “Not surprised... purely because a clinician can prescribe medication but a patient might not take it as prescribed.” • F3 - 66% of UK citizens find it very difficult to understand health-related information. “Surprised that it is as low as that, I would expect it to be more like 80-90 percent!” • F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised. “Not surprised... engagement between clinicians and patients has become more challenging with remote consultation.” Dev 2/10 Self-assessment 4/6 NVS results +46% Discrepancy Tablets Capsules Inhalers Spray Drops Creams 1/2 Patient Profiles | 34
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format
“Have to consider people with learning difficulties and people who do not speak english as a first language... so audio speech and translation would be helpful.”
“The only one I would choose is to make the information customisable... make it country specific, make it condition specific... dietary and culturally specific.”
I think all of the solutions will be helpful, but to a smaller percentage of the overall population.
Some people will be happy to get information through digital, but lots of people are not digitally conected still.
2/2 Patient Profiles | 35
Compliance
anagement Tools
Alternative Sources
• “I feel like I do understand it, minus the ingredients. Where I don’t, just Google it.”
• “My GP isn’t great ... they can be very vague so you have to read it [the PIL] if you want to know. It should be down to my GP to tell me what I need to know.”
Fact Check
• F1 - In the first few years after new medicines become available, the label can be updated more than 10 times.
“Surprised, I wouldn’t have thought up to ten times.”
• F2 - More than 92k patients are hospitalised every year in the UK due to adverse drug reactions to medicines.
“Surprised, I wouldn’t have thought so many. The numbers are high, but I can see how it can happen.”
• F3 - 66% of UK citizens find it very difficult to understand health-related information.
“Not surprised, my children are on the autism spectrum and my husband is dyslexic, so that’s three in my household already.”
F4 - After ten days
a new
for a long term condition, 1/3 of people are not taking it as advised.
“Not surprised, I was going to say surprised, but then I thought you can get comfortable using medication and if you don’t feel any better or different you might stop.”
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Health Literacy “I use Google occasionally to see what something means but it’s rare.” • Jenny would revisit the PIL sheet if: - A new medication is prescribed - She were to experience any side effects - Her health were to deteriote - She didn’t see any change in condition - She were prescribed additional medication • Jenny does not revisit the PIL for repeat prescriptions. • “ went through a bad stage of health anxiety ... so thought every medication would make me worse. The more I read, the more paranoid I would become.” • “So half of the ingredients, I wouldn’t have a clue about so I don’t really look at what’s in them, but I normally look at the side effects.” Product Information Engagement • “For me, the inside instructions are clear about how to take the medication and the side effects.” • “It wouldn’t bother me if the PIL sheet was removed, as long as I knew where to go to access it.” • “The PIL sheet sticks out too far [on bottle meds], soI take that off and throw it away now.” PIL Pain Points is 39, worked as a care worker and lives in the South of England. Vocational training Lives with spouse and children £35k - £55k High tech proficiency Autistic with ADHD English-first speaker Behaviours Serious Long-term Short-term High complexity Low complexity Minor Always read Packaging Read in part Always read PIL sheet Read in part
•
taking
medicine
Jennifer Tablets / x3 Daily / Morning, lunch & evening Capsules / x2 Daily / Morning, lunch & evening M
“ set alarms every day and have all of the meds out on the side ... usually the night before. I use a pill box to put them in as I am terrible at remembering ... I like to use those as it makes it so much more manageable and then I know if I’ve actually taken them.”
• Jenny ‘often’ takes her medication as prescribed. Her spouse and children also take regular medication for serious conditions, which she helps to manage and prioritises above her own. • “ have ADHD and occasionally forget to take on a daily basis.” 10/10 Self-assessment 5/6 NVS results -17% Discrepancy 1/2 Patient Profiles | 36
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“There are a lot of people that are very visual, whereas I am more of a kinisthetic learner.”
“For me personally, I can pick things up quite well, but I think actually so many people doing let’s say the swabs [Covid] for instance ... even reading the sheet, my husband ... because he’s dyslexic could not grasp it and I had to actually do the test ... and he was watching me do it, so think that actually a video might help a lot of people.”
“I’ve been asked by the GP if I want information emailed or texted to me, but personally I’m alright ... it might be easier for someone else, but I don’t need it.”
“I think an app would be great for sure, I have so many apps on my phone it’s unreal. You can choose to turn off your phone notifications but something like that would be great.”
“I don’t use my phone a lot to remind me but I will have the GP ring me to say my prescriptions are still there because I forget to collect them ... I have to order them when I am there now ... so a reminder to order, pick up and even take your medication all on one app would be great.”
There are a lot visual learners out there so I think that actually a video might help a lot of people.
2/2 Patient Profiles | 37
it’s
something I need to know, should it be on a similar leaflet that I have read before. If the pharmacist knows it has changed, should he tell me? Whose job is it to inform me? Do you as a
expect people to read X pages every time they open a pack of pills … then you are naive.”
every year
Condition Active lifestyle Quiet lifestyle Supported Lacks support Info seeker Info avoider Medication Type Tablets / x3 Daily / Mornings with breakfast Compliance • George ‘always’ takes his medication as prescribed. • “It has become a regular habit.” Health Literacy • “As my medication has remained constant I assume if there was any change in advice it would be drawn to my attention by either or both the GP or Pharmacy.” Product Information Engagement • “I feel the product information within the packets is just a waste of paper.” • “I mean to my mind it tells you what might happen, but if it hasn’t happened why do you want to know.” • “I think, more and more knowledge doesn’t necessarily make it easier to understand and I feel particularly sorry for people who read it and get worried.” • “Use of jargon and lengthy explanations doesn’t help.” PIL Pain Points is 94, a retired architect and lives in the North East of England. Bachelors degree Lives with spouse £15k - £35k Low tech proficiency English-first speaker Behaviours Serious Long-term Short-term High complexity Low complexity Minor Rarely read Packaging Read in part Never read PIL sheet N/A • “How much do I want to understand it? If I understood it 95%, would I be any better? If it isn’t worth the effort, why do it?” Fact Check • F1 - In the first few years after new medicines become available, the label can be updated more than 10 times. “Not surprised, If
being updated with
pharmacist
• F2 - More than 92k patients are hospitalised
in the UK due to adverse drug reactions to medicines. “Not surprised, in fairness, the degree to which people listen is different from the amount they are told.” • F3 - 66% of UK citizens find it very difficult to understand health-related information. “Not surprised no, there are no systems that make this foolproof.” • F4 - After ten days taking a new medicine for a long term condition, 1/3 of people are not taking it as advised. “Not surprised, you can only assume that people are sensible and take their medication.” George 2/10 Self-assessment 4/6 NVS results +46% Discrepancy Management Tools • “No tools needed, as long as I retain my mental faculties.” • George does not own any smart devices, having access to a laptop and a non smartphone. Alternative Sources • “Personal involvement in a wide range of medical research with different Universities.” • “There are lots of people now who rely on what they can see on the internet, but there is so much information ... how do you know where the truth is?” 1/2 Patient Profiles | 38
Future Solutions
Imagine that your needs and preferences determine what information will be provided on your medicine, in what format and through your preferred delivery channel.
Format Delivery
“Could the leaflet inside PIL packets be in cartoon [illustration] form. think this is where education and habit are not necessarily fed into the way information is provided.”
“How do you get that highlighted in the basic information, if I have an allergy for example and want it customised.”
“To my mind, I want the internet for emails, for people to communicate with me. The time I have had to come to terms with computers, I don’t feel like it has gotten easier, questions around security and keeping it up to date.”
“If you look at the developments of social media, I question whether people who have had a particular ailment could be in a WhatsApp group that could be updated with anything that has materially changed.”
I like the idea of leaflet customisation for people but I don’t have a fancy phone.
2/2 Patient Profiles | 39
