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Hello and welcome to Bone Up, the podcast all about bones, how we make them, why we

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break them and if we fully understand them. I'm David Armstrong.

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Hi, and I'm Richie Abel and over this series we're going to be exploring osteoporosis,

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bones, what we know and what we yet to discover and we hope you will join us on the journey.

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So for anyone keen to learn more about our infrastructure of calcified collagen, this

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is Bone Up.

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Hi David, really good to see you again.

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Yeah, it's good to be back for another episode of Bone Up.

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It's been fantastic so far. I've really enjoyed recording these episodes and we're getting

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good feedback from listeners and at the minute we have more than 850 downloads of the episodes

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we've put out.

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Yeah, that's really good. I've had a lot of local feedback and from pharmacists and

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from GP colleagues and even one or two from patients as well. So there's more just than

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your mother listening to us which is reassuring.

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I hear your brother's been listening to us as well.

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Yes, I have to point out a deliberate mistake in the last episode. It was pointed out that

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on a number of occasions I accused Professor McCluskey of having his hand on the rudder

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of the good ship Frax. It's been pointed out to me that the rudder is underneath the

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ship and if you have your hand on the rudder you have fallen overboard and that you should

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actually have your hand on the tiller. So apologies for that and thanks to my brother

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for pointing out that he is a solicitor folks so that's how he makes his money.

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You can always rely on family to point out your mistakes can't you?

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You can.

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I have to say I thought it was a really really good analogy and I didn't spot the difference

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between rudder and tiller. So we're both in it together.

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That's good and it's great to be starting another episode. We talked in the past I think

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how this was not a lecture series on osteoporosis but was really a journey through the world

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of bone health and how we'd be stopping at a lot of ports along the way you might say

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or Odysseus returning home from the Trojan War let's say then running to the local convenience

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store to buy a loaf of bread which is why this week we're talking about something a

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little related maybe to fracture risk but also quite different in many ways and that

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is about how we discuss risk with patients, how we communicate with patients, how we

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talk to patients about fracture risk and about the whole area of bone health and osteoporosis.

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So I think this is going to be a really interesting topic for professionals and also for patients.

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I personally don't really know very much about the patient journey and the process the clinicians

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and the patients go through. At what point during the care process do you talk to patients

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about risk and why?

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I suppose the point at which we talk about risk is usually when we're talking to them

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about starting a medication or making some other big change in management so it's usually

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after they've had the fracture risk assessment usually when they have a frax score from that

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or at the very least after they have a DEXA scan with a T score and we have got the patient

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usually in front of us face to face alone the last year there's been a lot of telephone

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conversations which is another area entirely in terms of communication but we've got the

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patient in front of us and often I would like to suggest to them that they start some new

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medication and I'm trying to share with them the benefits of the medication, the risks

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of not taking the medication, the possible side effects of the medicine that they're

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going to get and trying to just get an idea of where they are on their journey and to

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try to get them I suppose on board with the fact that this medication will be to their

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advantage.

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How successful do you feel you are with that? Do you ever get any feedback from the patients

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about the communication you have with them?

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Yeah, the best feedback you get ultimately is whether the patient takes the medication

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and I think all people involved in osteoporosis, I hope all clinicians involved in osteoporosis,

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I hope it's not just me, at times have what we feel is a very good conversation with the

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patient, we talk about bone health, we explore where they are in terms of bone health, we

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explain the risk of further fracture, we talk about the drugs available, we advise one drug,

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we balance the risks and benefits and the patient says yes I can't wait to start that

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doctor and they go away with their information booklet and then I get a phone call a week

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or two later from a nurse or a pharmacist or a GP to say the patient has decided not

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to go for that drug and clearly there was something wrong with my explanation or with

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the conversation or with the impression that I got when the patient was leaving the room

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of how they understood the issues and as I say I imagine everyone involved in osteoporosis

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has that experience so there's still a lot to learn about how we share this with patients,

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how we explore what the patient feels and how we just do our best to have people on

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the right medication for the right length of time.

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Could it be that after a patient speaks to you they understand the conversation, they

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understand the information and maybe they have made a decision to take the treatment

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but then perhaps there are other sources of information, you know your Facebook's, your

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Twitter's, you know friends and family that may be contradict or disagree with what you

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said maybe lead to people changing their mind.

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I think that's true and I think my honest response to the situation which I have just

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described is that while I feel at times probably I could have done better in my explanation

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or my discussion there are clearly times where people have gone away and have found things

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on the internet or spoken to other people and that has changed their mind.

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It's one of the issues we face in medicine in general at the moment and that is not just

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within osteoporosis but within all aspects of medicine and that is authority of sources

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or authority of experts because people will sometimes give credence to things they read

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on the internet, things they see in social media and weigh that more heavily perhaps

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than advice they're being given by the doctor or nurse or pharmacist, someone who has 20

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or 30 or 40 years experience in the field and is also accountable to them in that they

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work locally and they will see them again and they have a responsibility for their care.

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Sometimes people will be persuaded by reading things on the internet written by someone

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who they don't know, who doesn't live or work anywhere near them and who has no long term

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accountability or responsibility.

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But we live in a world now where information is freely available and we actively encourage

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people to go out and seek information and educate themselves about their condition but

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it's just the quality of that information and the authority behind that information

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but as I say that's a big issue in medicine in general at the moment.

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It's almost as though we need some sort of podcast interviewing experts about the disease

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and how it can be treated and managed better.

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Well that's true and do you know it is people sometimes say AI could almost take over from

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a doctor, you type your symptoms into the internet and it tells you what your disease

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is and what the medication is but I still think there is something to be said for the

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doctor-patient relationship and trusting the person opposite you that they seem to be an

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honest individual who is doing their best, using their expertise and working for your

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benefit because they are in a position of having more information and more experience

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than you will have from this and I say that's core to the doctor-patient relationship in

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many ways.

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Do you feel pressure at all to continually learn and develop and try and do better and

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improve your communications with the patients and is there any training for you?

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You certainly, that's almost two questions there in terms of do you feel pressure to

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learn and keep up to date and do better?

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Absolutely and it's one positive I think from the fact that patients can go onto the internet

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and do huge amount of research.

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If you are not up to date with the paper published last week and the patient is up to date with

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the paper published last week then they have more data than you do about whatever particular

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issue you are discussing, they may not have the experience and the general wisdom on the

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subject that you do to put it like that but they certainly have all the up to date information

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because it's widely available.

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So in a positive way the fact that information is so widely available now does put you under

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pressure to keep up to date.

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Specifically in terms of communication, I mentioned briefly about the telephone clinic

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which is something that all of us have been doing in the last year and for which I would

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suspect almost no doctors or nurses had any formal training and a lot of that has been

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learning on the job.

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I'd have to say when I was training you received relatively little education or training about

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communication or communication skills.

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I think it is something certainly can be taught and can be improved but it does depend to

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some extent as well I think on your personality and on just the sort of doctor-patient relationship

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that you build up.

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So that's maybe a good point to introduce our guest for the episode and that is Dr. Zoe

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Paskins and Zoe is someone who has a wealth of expertise on communication with patients

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and indeed has led and continues to lead research in the area of patient communication in the

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field of musculoskeletal health.

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So welcome to Zoe and over to you Richie.

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So our second guest today is Dr. Zoe Paskins, a reader in rheumatology and honorary consultant

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from Keel University.

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Zoe, it's really, really wonderful to have you on the show.

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My first question is what is rheumatology?

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Oh great, well thank you for starting with an easy question.

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I should have this at the tip of my tongue and I think it's quite hard to describe so

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I think rheumatologists look after people with long-term musculoskeletal conditions and inflammatory

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conditions.

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And to that effect I may not really be much of a proper rheumatologist because I actually

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don't see patients in my clinical practice very much with what we call inflammatory conditions.

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So these are things like rheumatoid arthritis which is kind of probably the bread and butter

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of rheumatology where there's inflammation in the joints and things.

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So my principal clinical interest and research interests are non-inflammatory long-term musculoskeletal

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diseases like osteoarthritis and osteoporosis.

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And I guess actually in reality many people with those conditions aren't looked after

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by rheumatologists, they're probably looked after by their GP.

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But yeah, that's my area of interest.

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It's good to get you started off with the easy questions.

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The next question is going to be a good one as well.

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I was wondering Zoe if you could tell our audience about your research programme.

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So I lead an osteoporosis research group in a primary care research centre and I'm what

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you'd call an applied health services researcher.

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So my research is mainly around very practical things that can improve care and particularly

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patient-centred care for people with osteoporosis.

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And when you say primary healthcare centre, is that a GP surgery?

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Yeah, so it's a primary care research centre within the School of Medicine at Keel.

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So there are over 100 researchers there who are focusing on the primary care angle of

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things.

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So although I'm a secondary care doctor, so I'm a hospital specialist, so I'm a little

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bit unusual to be working in a primary care research centre.

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It does include GPs, but of course primary care is a lot more than GPs.

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It's a range of other multidisciplinary clinicians and within our research centre we have a lot

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of primary researchers as well who are clinicians.

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What's the purpose of stepping out of the secondary care world into the primary care

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world?

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Well for me, it's about my sort of goal is for long-term common musculoskeletal conditions

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to be managed better.

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And for that reason, because I need to go into the primary care world because as I say,

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they often don't see rheumatologists.

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And part of primary care management, I suppose, is deciding who needs that specialist care.

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And so to be involved in those kind of discussions and decisions, you kind of need to move in

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that direction.

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I guess musculoskeletal diseases in general have probably got a bit of a low profile compared

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to other problems like cancer or cardiovascular disease.

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So part of our problem I think is the community is about raising the profile.

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And to that I think we have to step outside of our specialty silo a little bit.

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I understand that you do some research around risk and communicating risk.

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Yeah, so I think an element of my research is about risk communication, but I think it

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probably goes back to what you were just saying about raising awareness.

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For me, it's not just about awareness, but it's also about the quality of that information

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and messaging because there's a lot of misinformation around our condition, particularly off-stay

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process, which we're focusing around today.

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So I guess I've got a broad interest in communication generally and then within that risk communication

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as well.

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Hi, Zoe.

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Hi.

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Welcome to the Calcified Collagen Club.

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I'm glad you're able to join us today.

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You've got your glass of milk at the door, I hope.

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Of course.

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Can I ask just maybe some lessons from your experience and from the research you've done

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in the area of communication and quality of information?

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Because we're very keen to learn about how we explain risk to patients and how we discuss

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risk with patients.

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Now, as you know, I have a very practical brain, so if I can maybe arrange this around

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a practical question.

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If a patient, let's say a 75-year-old lady comes to you and says that she has a 10% 10-year

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risk of hip fracture and when we heard earlier from Eugene how we sort of developed that

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algorithm and how we produced that figure, she has maybe been seen at a fracture liaison

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service.

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She has a recluting radiographer who has calculated a frack score for her and she's got the impression

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from the other clinicians that a 10% 10-year risk of hip fracture is a high risk.

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And yet there are other things in life for which a 10% risk would not seem a particularly

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high risk.

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So how do you approach that whole area of discussing risk with a patient, particularly

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an older patient maybe who has comorbidities?

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Okay, so I mean you presented a scenario which I think is probably fairly unusual, isn't

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it, where somebody comes to you and says they've been told a specific figure and what have

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you.

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So the first question or thought when thinking about communicating risk with a patient is

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to find out what their own perception of their risk is.

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And that can be quite a hard question for people to answer I think.

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So I might ask them before going into any sort of risk communication about what they

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think about their bone strength.

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And I think it's really important to have that conversation first because if you don't,

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anything you say about risk may kind of fall on deaf ears if somebody doesn't believe what

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you're saying.

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So in the context of, did you say hip fracture risk when you said 10%?

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Yes, I mean it's an example you could have calculated yourself, but let's say a 10% 10-year

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risk of hip fracture, which as you know and we know from what we've heard earlier, but

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frax that puts you into the red area, that puts you into the high risk category.

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Yeah, so you and I would perceive a 10% risk as high wouldn't we?

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We don't know how this person feels about that and it's really important to unpick

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that first and I think there's lots of qualitative research that shows that not uncommonly people

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have been given a risk and they don't believe it.

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And so all the conversation that comes afterwards kind of almost falls on deaf ears because

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particularly if people say have fractured, but they have decided that they fractured

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because they fell over the cat or because whatever and anyone would have fractured in

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that circumstance.

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So for me, I think it's really important to ask what they think about their bone strength

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first and if they say, as this happened the last time I asked a patient he said, well

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I thought my bones were quite strong.

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So I had to do a little bit of work explaining what his risk factors were and how his bone

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density results and how that was just part of a picture of his overall bone strength

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and actually this gentleman had other risk factors, for example his medical conditions

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or medicines that would affect his bone strength.

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So I had to do that and then the patient I think is starting to realise will be more

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open to a discussion that they might be at perhaps higher risk than they thought they

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were.

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So that's the first thing to kind of preface any discussion on risk discussion I think

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with what they think.

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Then I'd want to kind of unpick in this scenario what they think by a 10% 10 year risk means

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because that's really complicated, right?

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So first of all it involves percentages and there's the old adage that 50% of people don't

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know what 50% means and not only is it a percentage it's got this element of time as well.

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So one of the ways that these kind of risk things can be misinterpreted is that people

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may think they're only at risk for 10% of the time instead of being at 10% risk.

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So you can see how easy these are to be misconstrued.

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So the good news about risk communication is that there's actually a huge literature

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of evidence to draw on outwith of the approach and if people are interested in this the FDA

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have produced a book on it which is available online and it summarises all the evidence.

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But the kind of if I'd have been the person to give this person their frax result I wouldn't

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have said they are at 10% risk over 10 years.

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I would say that they had a one in 10 risk over 10 years.

250
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So it's about using simple frequencies one in 10 instead of 10%.

251
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Okay that's a very useful point.

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And in general when we use those simple frequencies the denominator, the second number the easier

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it is to understand.

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So I've done a bit of mental maths there and changed 10% which is really 10 in 100 to one

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in 10.

256
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However, if you're talking about multiple risks in the same conversation it's important

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to try and use the same second number because it makes it easier for the patient to do some

258
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comparisons.

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So but in this example I probably said I had a one in 10 year risk.

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Now the other thing about risk communication is that you're supposed to do something called

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positive and negative framing.

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So in other words you'd say the risk of something happening and the risk of something not happening.

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And that avoids the sort of cognitive biases where we focus on one event rather than the

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other.

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And I particularly do this when I'm talking about side effects.

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So if I said that somebody had a one in 1000 risk of getting a jaw bone problem if they

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took a bisphosonate for 10 years for example I'd also say that they had a 999 in 1000

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chance of that not happening.

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So that's positive and negative framing and tries to avoid the focus on one rather than

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the other.

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And it's certainly something I think comes up in this whereas a 10 or 15% risk of hip

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fracture is perceived as high but if you turn that around and frame it positively and say

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85 or 90% risk of not having a hip fracture then the patient probably justifiably would

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go away thinking well that was a positive outcome.

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And I think we probably as all as doctors can be guilty of that a little maybe pushing

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the positive or pushing the negative if we're hoping to persuade people towards one outcome

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or another.

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Yeah.

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We're walking this tightrope between shared decision making where we're supposed to present

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all the facts in a very neutral and unbiased way and beneficent persuasion where we're

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actually trying to encourage the patient to make a decision that's in line with their

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values.

283
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And it's a very fine tightrope I think and I think there is ethical justification in

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some situations to kind of use what we know as long as it's not going too far into just

285
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persuasion and what have you.

286
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So I think when we know maybe in that context in my own practice I haven't actually thought

287
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about this before but actually now I do think about it.

288
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I probably wouldn't use positive and negative framing when I was talking about fracture

289
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risk but I would do when I'm talking about side effects because I think there's an over

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focus on the negative.

291
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Absolutely.

292
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Yes.

293
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To some extent you're correcting what might be an incorrect perception.

294
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Yeah.

295
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Why we're in that area it's something that I felt probably increasingly aware of in my

296
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practice over the last few years and that is comparing diseases and the risks of comparing

297
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diseases and it's something I probably did in the first episode of this and it's comparing

298
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the outcome in whatever disease you're talking about with the outcome in cancer.

299
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And particular and I think in the first episode I quoted that around 25% of men with hip fracture

300
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will die within a year and compare that by saying that most cancers for example have

301
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a better outcome than that.

302
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Do you think it's fair comparing diseases like that and in particular do you think using

303
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comparison with cancer is fair for patients?

304
00:24:35,680 --> 00:24:41,400
Do you think it's helpful or do you think comparing diseases just clouds the issue?

305
00:24:41,400 --> 00:24:48,320
Well, that's another corking question and it's like two or three questions in one so

306
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you have to give out fairness.

307
00:24:49,920 --> 00:24:52,920
Yeah, we're getting our value for money.

308
00:24:52,920 --> 00:24:59,560
Yeah, so I guess it depends on your purpose is my answer to that because I think in the

309
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risk communication literature one of the techniques for getting people to appreciate

310
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what a risk actually means is to compare it to the frequency of another event but usually

311
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you see this more in rare things.

312
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So maybe if you were again talking about side effects you might say the chance of that happening

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is equivalent to being run over or being in a car accident or something like that and

314
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there's visual ways of showing risk compared to the risk of other events in your life.

315
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In the example that you gave I think that the purpose is a bit different it's not to aid

316
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understanding but it's almost to kind of emphasise the importance possibly and I don't think that's

317
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a particularly personally effective or helpful because I think the although what you do raise

318
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is a really important point and again this is context for this risk conversation.

319
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Before you've even started talking about this risk and an individual's risk you've hopefully

320
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set the scene about why obviously a process is important and what the consequences of

321
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it are and the physical, social and psychological consequences of fracture and for me that's

322
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the important conversation.

323
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I think comparing it with cancer, cancer is a very emotive word and people will react

324
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to it very very differently and have different experiences and thoughts about it and as soon

325
00:26:24,200 --> 00:26:28,960
as you mention it you know but somebody might be going off on a different train of thought.

326
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So I think for me it's about what's your purpose and if it's to emphasise that this

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is common it's important absolutely that's important but I think we should be doing that

328
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in other ways.

329
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For example some of our research has centred around this, around how best to do this without

330
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driving fear of living God into somebody but one of the things that people commonly don't

331
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understand is the effect of spinal fractures and the fact that they although they heal

332
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they remain misshapen and then that can affect your posture and so on and actually being

333
00:27:05,120 --> 00:27:10,760
able to show somebody that and explain that is an important part I think of explaining

334
00:27:10,760 --> 00:27:17,880
what the consequences of osteoporosis might be and why it's important to take steps to

335
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lower the risk of fractures and try and protect the spine and so on.

336
00:27:22,200 --> 00:27:26,960
Yeah it's something I used to say I have become probably more uncomfortable with comparing

337
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things with cancer because you don't always know the patient's background, their lived

338
00:27:31,480 --> 00:27:37,280
experience and exactly it's a very emotive issue and then I've probably tried to move

339
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away from that so I mean you've mentioned that we should rather than use percentages

340
00:27:43,640 --> 00:27:47,520
we should probably break things down to one in ten or one in twenty.

341
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I think the positive and negative framing is very useful.

342
00:27:51,320 --> 00:27:58,600
Have you any other tips for us from your experience or from your research about explaining

343
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risk to patients?

344
00:27:59,840 --> 00:28:05,840
Do you think patients deal with the concept of risk more easily or deal with the concept

345
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of something wrong with a tissue in the body more easily?

346
00:28:10,120 --> 00:28:16,000
Because I think when we're moving away from using DEXA just for diagnosis to using FRACs

347
00:28:16,000 --> 00:28:23,480
and risk scores to inform treatment do you think people are people find it easier to

348
00:28:23,480 --> 00:28:27,800
deal with the concept of a tissue wrong in their body than this mathematical concept

349
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of risk?

350
00:28:30,240 --> 00:28:34,960
Yeah so again you've asked me two questions in one letter so I'm going to go with the

351
00:28:34,960 --> 00:28:41,360
right I want to hold on to the first one which was about any other tips for risk and then

352
00:28:41,360 --> 00:28:45,400
we'll come to that second one which I think is really really important.

353
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So the first one was have you got any other tips around how to communicate risk and I

354
00:28:50,920 --> 00:28:56,240
did just want to touch on the use of words because we've already said in the scenario

355
00:28:56,240 --> 00:29:00,000
you painted earlier that this woman has got a high risk with use of word high haven't

356
00:29:00,000 --> 00:29:01,000
we?

357
00:29:01,000 --> 00:29:02,000
Yeah.

358
00:29:02,000 --> 00:29:08,080
So if I said that you had a high risk of COVID infection what kind of percentage risk

359
00:29:08,080 --> 00:29:10,320
Ritchie would you think that you had?

360
00:29:10,320 --> 00:29:11,320
5%

361
00:29:11,320 --> 00:29:14,520
Okay that wasn't the answer I was saying.

362
00:29:14,520 --> 00:29:20,200
Okay 5% so if someone said you had a very high risk of COVID what would you think?

363
00:29:20,200 --> 00:29:25,560
Maybe 90% and what would that affect your behaviours?

364
00:29:25,560 --> 00:29:29,760
I suppose I'd work from home or avoid contact with other people.

365
00:29:29,760 --> 00:29:34,480
I might be inclined to tell other people that I'm at high risk so they might change their

366
00:29:34,480 --> 00:29:36,560
behaviour and stay away from me.

367
00:29:36,560 --> 00:29:47,160
So I think words are interpreted very differently from person to person and the Royal Osteoporosidium

368
00:29:47,160 --> 00:29:51,360
Society helpline gets called every day from people who've been told they're either at

369
00:29:51,360 --> 00:29:56,440
high or very high risk of fracture and are terrified to go outside and they're probably

370
00:29:56,440 --> 00:30:01,400
equating a high risk to more of a sort of you know I am going to fracture and I mustn't

371
00:30:01,400 --> 00:30:05,480
leave the house kind of frame of mentality and clearly we're talking about high in the

372
00:30:05,480 --> 00:30:11,320
context of a 1 in 10 risk which where the balance of probability is that this person

373
00:30:11,320 --> 00:30:13,800
won't have a fracture isn't it?

374
00:30:13,800 --> 00:30:20,960
So we need to be very careful about the use of high risk particularly and very high and

375
00:30:20,960 --> 00:30:25,440
because these words are used very differently again the kind of risk communication literature

376
00:30:25,440 --> 00:30:29,760
advises that you don't use them or if you do use them you qualify them with the numbers

377
00:30:29,760 --> 00:30:34,360
as well you don't use them on their own and again talking about side effects is why I

378
00:30:34,360 --> 00:30:37,920
think it's really helpful when you talk about risk for side effects so studies have shown

379
00:30:37,920 --> 00:30:42,680
that people interpret rare very differently is one in 10 or one in a thousand so they

380
00:30:42,680 --> 00:30:48,320
just saying oh don't worry it's very rare is not helpful and of course people tend to

381
00:30:48,320 --> 00:30:52,360
think in a binary way as well they don't think in a risk probability way if somebody knows

382
00:30:52,360 --> 00:30:58,760
somebody who's had an event particularly osteonecrosis of the jaw and you tell them the risk is

383
00:30:58,760 --> 00:31:03,400
one in a thousand then it's kind of meaningless because they think about their own personal

384
00:31:03,400 --> 00:31:10,400
experience and their own personal narrative so all sorts of difficulties there so going

385
00:31:10,400 --> 00:31:17,040
back to the scenario I think the important thing is not to use the word high on its

386
00:31:17,040 --> 00:31:26,320
own to use words in combination with frequencies and then to try and if you're going to use

387
00:31:26,320 --> 00:31:31,720
a word or a label use a meaningful word or a label so you could say in this patient in

388
00:31:31,720 --> 00:31:37,040
this example if they wanted to know whether 10% was high or low for their age you could

389
00:31:37,040 --> 00:31:41,880
say well this risk falls into the treatment zone rather than saying it falls into the

390
00:31:41,880 --> 00:31:46,040
high risk you could say it falls into the treatment zone for your age and you could

391
00:31:46,040 --> 00:31:50,680
show them the nog graph to kind of illustrate that where it plots risk in sort of green

392
00:31:50,680 --> 00:31:52,720
or red depending on their age.

393
00:31:52,720 --> 00:31:56,920
It's really interesting that you say that because I've always been concerned with the

394
00:31:56,920 --> 00:32:03,280
term high risk to me high risk of rain to me means that it's more than likely it's going

395
00:32:03,280 --> 00:32:09,000
to rain than not going to rain and I've always wondered about using the term high risk in

396
00:32:09,000 --> 00:32:14,880
patients and I wonder and I know it opens a whole new discussion but using terms like

397
00:32:14,880 --> 00:32:22,200
high for your age or higher than average which indicates that we're concerned but qualifies

398
00:32:22,200 --> 00:32:29,000
it in some way and as you know we're now developing or there's this term imminent risk as well

399
00:32:29,000 --> 00:32:34,120
which is being used which could be a very useful term but again to me it suggests to

400
00:32:34,120 --> 00:32:39,240
patients that they are about to fracture and that we would be surprised if they didn't

401
00:32:39,240 --> 00:32:44,760
fracture and fracture in the near future whereas for most people who we say had very

402
00:32:44,760 --> 00:32:49,640
high risk or imminent risk we know that that's not the case.

403
00:32:49,640 --> 00:32:53,040
We almost need to tune down our language do you think?

404
00:32:53,040 --> 00:33:00,320
We almost need to move it down from suggesting that this is very dangerous to suggesting

405
00:33:00,320 --> 00:33:04,400
that something you can positively do something about.

406
00:33:04,400 --> 00:33:11,960
Absolutely and I think that kind of speaks to what your second question was a few questions

407
00:33:11,960 --> 00:33:17,080
back which was about does it, I'm paraphrasing now I'm not going to get it right but it was

408
00:33:17,080 --> 00:33:24,080
telling you around does it matter that we're giving people a risk score rather than giving

409
00:33:24,080 --> 00:33:27,680
them a kind of tissue diagnosis I think that was what you were talking about.

410
00:33:27,680 --> 00:33:32,520
Yeah I just wondered if people find it easier to deal with the concept of a tissue diagnosis

411
00:33:32,520 --> 00:33:39,320
as opposed to dealing with the concept of a figure of risk.

412
00:33:39,320 --> 00:33:44,440
There's a helpful psychological model for how people make sense of disease and it's

413
00:33:44,440 --> 00:33:49,640
got five elements to it to how people make sense of the disease and all their condition

414
00:33:49,640 --> 00:33:53,600
and then that affects what behaviours and actions they'll put in place to deal with

415
00:33:53,600 --> 00:33:59,080
it and the first element is the identity so what is it that is this condition and can

416
00:33:59,080 --> 00:34:03,880
you describe it how do you characterise it what symptoms does it give you and so on and

417
00:34:03,880 --> 00:34:09,280
I think we can do that frosty approach and I think that I personally don't think it's

418
00:34:09,280 --> 00:34:13,840
matter whether it's a scan or a tissue or whatever I think it does osteoporosis does

419
00:34:13,840 --> 00:34:16,400
have an identity.

420
00:34:16,400 --> 00:34:23,920
The second element is the consequences of it so what does it lead to and in our case

421
00:34:23,920 --> 00:34:30,720
again we talk about fractures then there's the causes importantly and we talked before

422
00:34:30,720 --> 00:34:34,840
about really important to help people understand what their own particular risk factors are

423
00:34:34,840 --> 00:34:40,280
so they can accept the diagnosis or the risk that we're talking to them about.

424
00:34:40,280 --> 00:34:46,400
Third element is the timeline so what happens to it over time and that contributes to how

425
00:34:46,400 --> 00:34:51,840
much you care about doing something about it and links to the consequences and the final

426
00:34:51,840 --> 00:34:56,560
bit is the controllability so can I do something about this or is it just sort of fate that

427
00:34:56,560 --> 00:35:03,640
it's an osteoporosis is this just a natural consequence of ageing that is not for which

428
00:35:03,640 --> 00:35:08,200
treatment is futile a lot of people hold that belief and they may have been told you've

429
00:35:08,200 --> 00:35:12,840
got osteoporosis but it's normal for your age so why on earth would you take a tablet for

430
00:35:12,840 --> 00:35:18,160
your osteoporosis if you've got something that's normal for your age so we need to attend to

431
00:35:18,160 --> 00:35:23,720
all these elements when we're giving somebody a diagnosis and it's harder to do when you're

432
00:35:23,720 --> 00:35:29,480
talking about risk alone and you haven't got that osteoporosis diagnosis you can to a little

433
00:35:29,480 --> 00:35:35,600
extent but I think for people to understand the identity what does that mean is a little

434
00:35:35,600 --> 00:35:42,360
bit harder but I think it makes it a lot easier if you can give somebody a clinical diagnosis

435
00:35:42,360 --> 00:35:47,400
of osteoporosis so there are often times I think scenarios where we don't either don't

436
00:35:47,400 --> 00:35:57,440
have a bone density result because it's not recommended in people over a certain age or

437
00:35:57,440 --> 00:36:02,280
because of bone density scan isn't practical but we know they've got bone fragility particularly

438
00:36:02,280 --> 00:36:07,360
in people who've had hip or spinal fractures before and in those contexts I think a clinical

439
00:36:07,360 --> 00:36:12,600
diagnosis of osteoporosis is a very sensible approach well it's not strictly speaking what

440
00:36:12,600 --> 00:36:18,920
the World Health Organization criteria would encourage us to do but and I think it's really

441
00:36:18,920 --> 00:36:25,320
important for patients to help make sense of their condition and make changes to their

442
00:36:25,320 --> 00:36:35,160
health behaviours to mitigate that. Part of our research I think is to try and get some

443
00:36:35,160 --> 00:36:41,640
quick and simple take home messages for around communication and translation of scientific

444
00:36:41,640 --> 00:36:47,560
evidence. There's some quick and easy wins I think that we're doing really badly I mean

445
00:36:47,560 --> 00:36:53,720
one quick example if I may is we've just sort of reviewed the quality and readability

446
00:36:53,720 --> 00:36:59,560
of nine different patient information sources about osteoporosis that are available online

447
00:36:59,560 --> 00:37:05,400
from charities and NHS and so on and we looked at the language that was used and you wouldn't

448
00:37:05,400 --> 00:37:12,560
believe the power of a single word that's in the wrong place or with them can have real

449
00:37:12,560 --> 00:37:21,320
massive consequences so for example a lot of the information about osteoporosis drugs

450
00:37:21,320 --> 00:37:28,960
talks about them preventing fractures and we know that the general principle at a population

451
00:37:28,960 --> 00:37:35,080
level of osteoporosis drugs is for fracture prevention but on an individual level if you

452
00:37:35,080 --> 00:37:40,440
tell a patient that their drug is going to prevent fractures it doesn't it lowers the

453
00:37:40,440 --> 00:37:46,200
risk and then if that individual then has a fracture their treatment expectations aren't

454
00:37:46,200 --> 00:37:52,120
met and they'll stop taking the tablet and there's so much of that that we don't make

455
00:37:52,120 --> 00:38:00,440
clear what medicines do in osteoporosis and we're not clear about it ourselves I think

456
00:38:00,440 --> 00:38:05,960
amongst the community they're let alone to express that clearly to patients. Within osteoporosis

457
00:38:05,960 --> 00:38:11,240
I think there are some small quick wins that we could just be a lot better at and I think

458
00:38:11,240 --> 00:38:17,800
that's what we're trying to spread the message about. It all brings it back to that understanding

459
00:38:17,800 --> 00:38:24,600
of risk doesn't it in that if a patient has an infection and you give them an antibiotic

460
00:38:24,600 --> 00:38:28,600
their goal is that the infection is cleared and that's a binary outcome the infection

461
00:38:28,600 --> 00:38:33,520
is gone or it's not gone if they have high blood pressure and you give them an antihypertensive

462
00:38:33,520 --> 00:38:38,280
they expect to have the blood pressure checked and be told it's back to normal but it's harder

463
00:38:38,280 --> 00:38:45,560
to hold in your head the concept that my risk of fracture has now reduced from 10% to 5%

464
00:38:45,560 --> 00:38:50,840
because I don't actually feel any different knowing that my risk of fracture has reduced.

465
00:38:51,960 --> 00:38:59,320
Yeah so we've done some work with patients about how to best explain that and now we're using

466
00:39:00,120 --> 00:39:06,280
language about uh you'd like this uh David because it's a metaphor. Oh I love metaphors yeah

467
00:39:06,280 --> 00:39:12,280
and similesh you've got to save up in your bone bank is one I haven't used this in patients yet

468
00:39:12,280 --> 00:39:17,160
but it's like saving up to go on holiday and if you checked your piggy bank in six months and

469
00:39:17,160 --> 00:39:21,000
just stop saving then you'd be disappointed because you wouldn't have enough to go on holiday

470
00:39:21,000 --> 00:39:25,240
I can actually this one this one is from Rob Horn so I must acknowledge him on this one

471
00:39:26,280 --> 00:39:31,960
and um yeah so you and also emphasizing that it works silently in the background

472
00:39:31,960 --> 00:39:36,520
um and that you can't feel your bones strengthening again this is another thing if people feel

473
00:39:37,400 --> 00:39:41,720
common reason why people stop taking their medicines they don't feel better because their

474
00:39:42,360 --> 00:39:46,360
treatment expectations haven't been met they don't feel better they've been told they'll be

475
00:39:46,360 --> 00:39:51,240
stronger they think they'll feel stronger and be able to garden better and all the rest of it.

476
00:39:51,240 --> 00:39:55,880
Absolutely and you know that's something I have any of my patients are actually listening to this

477
00:39:55,880 --> 00:40:01,640
many of them have heard me saying you will not feel stronger after you take this medication

478
00:40:01,640 --> 00:40:06,040
I often sort of raise my right arm to show them my biceps and say to them you will not

479
00:40:06,040 --> 00:40:12,360
go out after receiving your IVs, ulntronic acid and feel stronger but you'll know that you've

480
00:40:12,360 --> 00:40:16,280
done something to reduce your risk of having one of those fractures again.

481
00:40:19,480 --> 00:40:26,680
How do you research the doctor patient interactions do you bring people in and watch these interactions

482
00:40:26,680 --> 00:40:32,360
in a lab setting do you record them for quality control what's the process? Well there's all

483
00:40:32,360 --> 00:40:38,200
sorts of things you can do so um you can you can observe interactions and then you could analyse

484
00:40:38,200 --> 00:40:45,320
that either qualitatively or quantitatively actually for my phd i video recorded 200 gp

485
00:40:45,320 --> 00:40:53,240
consultations and qualitatively qualitatively analyse them and I that was around osteoarthritis

486
00:40:53,240 --> 00:40:58,680
and how that was discussed and then I interviewed patients and gps afterwards and showed them clips

487
00:40:58,680 --> 00:41:04,360
of their consultation and then using a method called video stimulated recall to get their further

488
00:41:04,360 --> 00:41:10,440
sort of perceptions on what had happened and what meanings they'd taken from things um but you can

489
00:41:10,440 --> 00:41:15,000
you don't have to do observe it I mean probably the best way of finding out what actually happens

490
00:41:15,000 --> 00:41:21,800
in a consultation is to observe it but indirectly I suppose the most common commonly we find out

491
00:41:21,800 --> 00:41:27,000
information about what people think about their consultations afterwards through through interviews

492
00:41:27,000 --> 00:41:33,800
or less commonly surveys or focus groups or whatever and where do you think the future of

493
00:41:33,800 --> 00:41:43,720
this research is going to go? Well that's a really good question we've still got loads to do we're

494
00:41:43,720 --> 00:41:50,120
in we've got a condition which within osteoporosis if we're talking about osteoporosis we've got a

495
00:41:50,120 --> 00:41:57,160
condition which is very poorly managed poorly identified is not patient-centered at all in its

496
00:41:57,160 --> 00:42:05,400
approach and has very poor treatment uptake so we've got and actually the communication

497
00:42:06,280 --> 00:42:11,560
both between between researchers and clinicians between clinicians and between clinicians and

498
00:42:11,560 --> 00:42:17,800
patients is at the root of lots of these problems so really it could go in many directions and

499
00:42:17,800 --> 00:42:23,560
there's still an awful lot of work to do. It sounds like what we need is some sort of

500
00:42:23,560 --> 00:42:28,760
infotaining podcast about bone health and osteoporosis. If only if only we have that that would be

501
00:42:28,760 --> 00:42:37,080
amazing. With interesting and exciting guests in to be. Yeah completely that's what we need.

502
00:42:38,600 --> 00:42:43,880
Zoe that has been an absolutely enthralling conversation I think it's going to be really

503
00:42:43,880 --> 00:42:48,520
interesting for the people who are patients listening to this I think it's going to be nice to get an

504
00:42:48,520 --> 00:42:55,400
insight into the thinking that goes in from the clinical side both within a consultation but also

505
00:42:55,400 --> 00:43:00,600
all the research that's going in behind those scenes to make sure those consultations improve.

506
00:43:00,600 --> 00:43:06,520
The doctor-patient interaction is the most fundamental thing in healthcare and all those

507
00:43:06,520 --> 00:43:11,560
problems that you just listed poor identification of the disease poor uptake of treatment etc.

508
00:43:11,560 --> 00:43:18,680
We could go a long way to solving those problems if you can improve those consultations and also

509
00:43:18,680 --> 00:43:23,960
you know more widely the public information that is disseminated around the condition.

510
00:43:24,520 --> 00:43:27,960
Thank you Richard that's a great summary of why I exist thank you.

511
00:43:29,000 --> 00:43:36,920
It's such an important area of research and we can put so much money into finding a new drug

512
00:43:36,920 --> 00:43:43,640
and yet if the doctor uses one wrong word in that first consultation and the patient decides not to

513
00:43:43,640 --> 00:43:50,920
take the drug then all the research on the benefit of the drug really doesn't matter and I think I

514
00:43:50,920 --> 00:43:56,040
agree with Richie it's why this type of research in this area of medicine is the foundation in

515
00:43:56,040 --> 00:44:01,320
which everything else is built. Thank you Zoe. Thank you. Thank you.

516
00:44:01,320 --> 00:44:10,840
So David I really enjoyed the interview we did with Zoe I thought she was very articulate and

517
00:44:10,840 --> 00:44:17,320
very clear and it was a really interesting insight for me into the you know doctor-patient

518
00:44:17,320 --> 00:44:23,640
relationship and the kind of communication that goes on. What for you do you think were the key

519
00:44:23,640 --> 00:44:32,920
takeaway points? I have to say the first takeaway point I had was not to ask three questions at once

520
00:44:33,480 --> 00:44:39,800
particularly not to Zoe who was very keen to draw me up on that and that's just to improve my

521
00:44:39,800 --> 00:44:46,760
interviewing technique. I mean I think one of the most important things she said was just to

522
00:44:46,760 --> 00:44:53,880
just to set the scene for the patient and find out a little about what the patient's expectations

523
00:44:53,880 --> 00:44:59,160
are and what their beliefs are because if a patient thinks they've broken their hip because they

524
00:44:59,160 --> 00:45:05,640
tripped over the dog then if you immediately launch into discussion of fracture risk and

525
00:45:05,640 --> 00:45:11,880
assessments and bone density and and and drugs you may have lost the patient because they're not

526
00:45:11,880 --> 00:45:18,520
on the same page and just a little time at the start finding out what they think and then if

527
00:45:18,520 --> 00:45:25,800
you as the clinician feel that they're maybe not up to speed with the risk as I appreciate it then

528
00:45:25,800 --> 00:45:32,200
a little discussion about well you know your sister has broken her hip and you've taken steroids and

529
00:45:32,200 --> 00:45:38,120
you know do you not think maybe your bones maybe brittle you may be at risk and just a little just

530
00:45:38,120 --> 00:45:44,840
a five or ten minutes spent doing that can make such a difference in the long term as we said earlier

531
00:45:44,840 --> 00:45:50,280
you can have a fantastic expensive drug but if you get the word wrong at the start if the patient's

532
00:45:50,280 --> 00:45:57,160
not on board right at the start then if the drug's not taken then they get no benefit from it so I

533
00:45:57,160 --> 00:46:03,160
think that's setting the background and finding out what the patient's understanding of the problem

534
00:46:03,160 --> 00:46:11,240
is before you start is really useful there were other just small things for example like using

535
00:46:11,240 --> 00:46:16,520
I think the term is vulgar fraction rather than a percentage and if I'm wrong in that please

536
00:46:17,080 --> 00:46:24,840
please do correct me but rather than saying 25 percent saying one in four because people find

537
00:46:24,840 --> 00:46:30,280
that much easier to understand that's something I might change next week in the clinic when I'm

538
00:46:30,280 --> 00:46:37,880
talking to people it's interesting that you would make changes in how you talk to patients

539
00:46:37,880 --> 00:46:43,000
based on the discussions that we've had today are there any other changes do you think that you'd

540
00:46:43,000 --> 00:46:49,720
make I enjoyed our discussion briefly about I think the technical term is positive and negative

541
00:46:49,720 --> 00:46:56,600
framing because that's a very powerful tool and as I think we mentioned earlier and so if you say

542
00:46:56,600 --> 00:47:02,920
to a patient you have a you have a 10% risk of suffering a hip fracture in the next 10 years and

543
00:47:02,920 --> 00:47:08,200
hip fractures are a terrible thing to happen I can say it like that if I'm really trying to

544
00:47:08,200 --> 00:47:14,760
persuade the patient to take a drug but you can frame that negatively and say there's a 90% chance

545
00:47:14,760 --> 00:47:20,680
that you won't have a hip fracture and I can use that if I'm really trying to persuade the patient

546
00:47:20,680 --> 00:47:28,360
let's say not to take the drug and those are very powerful tools and Zoe discussed how you know we

547
00:47:28,360 --> 00:47:35,880
need to use those carefully and how while in some circumstances we should both positively and negatively

548
00:47:35,880 --> 00:47:43,400
frame things for example if we're trying to put the risk of very rare side effects from bisphosphonates

549
00:47:43,400 --> 00:47:49,800
into perspective it's important to negatively frame things but there are some instances in which if

550
00:47:49,800 --> 00:47:56,760
you if you give the that flip side that 50 or 60 or 70% chance on something not happening then you

551
00:47:56,760 --> 00:48:02,280
can actually dilute your message so I think she used the term tight rope we're always walking a

552
00:48:02,280 --> 00:48:09,320
tight rope trying to respect the patient's view trying to help them make the decision I think she

553
00:48:09,320 --> 00:48:16,120
used the term in keeping with their values but also at the same time realizing that you are the

554
00:48:16,120 --> 00:48:22,600
expert and you have the knowledge and that you're trying to use that to enable them to make what you

555
00:48:22,600 --> 00:48:28,280
think is the right decision or the best decision and that positive and negative framing of things is

556
00:48:28,280 --> 00:48:34,840
a very powerful tool and again that's something I think I probably need to think about how I use

557
00:48:34,840 --> 00:48:40,280
that at the clinic and the other people in the clinic then are the patients the people living

558
00:48:40,280 --> 00:48:49,080
with osteoporosis what do you think would be the key takeaways for the patients from today's interview

559
00:48:50,840 --> 00:48:56,360
I suppose the correct answer to that is that we'd love to hear from the patients because I wouldn't

560
00:48:56,360 --> 00:49:02,440
I wouldn't dare to speak on their behalf and certainly we have had a lot of feedback from

561
00:49:02,440 --> 00:49:08,520
patients and we're keen to have more I suppose the general answer to that is what we're trying to do

562
00:49:08,520 --> 00:49:18,280
in this podcast series and that is is educate and inform and entertain but ultimately to I suppose

563
00:49:18,280 --> 00:49:26,440
empower patients that they feel educated about osteoporosis and that specifically they feel

564
00:49:26,440 --> 00:49:34,280
empowered to get the most out of the interaction with the clinician we know that time with a

565
00:49:34,280 --> 00:49:39,480
clinician particularly with an expert in the hospital for example is precious and often quite

566
00:49:39,480 --> 00:49:45,000
short and we want to really empower people that they feel they can get the most out of that by

567
00:49:45,000 --> 00:49:51,320
being knowledgeable asking the right questions and coming away feeling confident about the

568
00:49:51,320 --> 00:49:58,600
decision that they've made and if what we've talked about today contributes to that well then

569
00:49:58,600 --> 00:50:07,560
I think the episode a little bit worthwhile that's really fantastic I love that really positive and

570
00:50:07,560 --> 00:50:12,760
empowering message and it's going to be really really really good if we can help anybody to do

571
00:50:12,760 --> 00:50:17,960
that so if you're listening to the podcast and you have learned anything interesting or you do

572
00:50:17,960 --> 00:50:22,600
find the information useful or you do take it into a consultation then please let us know for

573
00:50:22,600 --> 00:50:31,880
better or worse how it went I suppose now we should draw the episode to a close bye bye everyone

574
00:50:31,880 --> 00:50:57,160
bye now