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Professor Dame Lesley Fallowfield
Careers and professional development, Oncology

‘I know how to measure difficult things’

Our editor Dr Jon Sutton meets Professor Dame Lesley Fallowfield, Director of the Sussex Health Outcomes Research and Education in Cancer (SHORE-C) group at the University of Sussex.

16 May 2024

You can also listen to this conversation, as an episode of our Research Digest podcast, PsychCrunch.

I can't resist starting with the Damehood, which you were awarded in 2016. Does that change things, does it open doors in terms of your work?

That's an interesting question. I guess the biggest effect is when I'm travelling and talking in the US… Americans seem to feel that I must actually be invited to Buckingham Palace for tea every day.

I received the honour for 'services to psycho-oncology, which intrigued the Queen. She understood 'oncology', but asked about the 'psycho' part, which she thought sounded a bit sinister. Perhaps she had this image of the shower scene in Psycho… 

I guess it isn't always obvious what psycho-oncology does encompass. It is a meld of the psychological, behavioural, social and emotional aspects of cancer, as it applies not just to patients, but also to families, friends, the general public, and indeed, the healthcare professionals who are trying to help patients with a life-threatening or life-limiting disease. It's a mass of different things, which is why it's a very attractive area for psychologists to work in. We're not just dealing with the more obvious things that people think about, in terms of emotional aspects of disease, and helping patients cope with anxiety and depression… we're doing a massive amount of other activities, which is why my group exists.

We'll come on to specific aspects and projects, but first if I could take you back to when you started out… you trained as a nurse, so I'm wondering when and why you changed course on that. 

Well, my CV is very weird, but I hope it's also something that would encourage people to not feel scared of reinventing themselves.

I dropped out of school in the sixth form. I had fantasies about doing medicine, but back in those days, you really needed A-level Physics. I had failed mock O-level Physics, so there was no way. I just left school and I went to Germany. I worked in a youth hostel for six months over there. I came back and I thought, 'What have I done with my life?', so I applied to do Nursing at Guy's Hospital.

It was a strange time, the late 1960s, early 70s. Most medical students were male, and really intelligent women were doing nursing who might have been able to have done Medicine had they wished. But I loved it. I really enjoyed the patient contact. Nursing offers a wonderful opportunity to make an immediate difference to somebody's life. You can always do something that very quickly is going to have a huge impact on making them feel a bit more comfortable, relaxed or whatever. So I did enjoy it. But I loved going on ward rounds. I was really interested in the senior doctors trying to test the medical students. I'd be thinking 'I know the answer to that'. 

I got married very young and had a baby, and then did a whole variety of Open University courses, everything from art history, to genetics, to comparative physiology, all sorts of things. And I discovered psychology. I loved it. And here comes the Educating Rita moment: my tutor actually said, 'What on earth are you doing? Why aren't you working in Psychology? I lecture at Sussex University. We have mature student entry programmes, you could probably teach the course'. And so I did, I went to Sussex and I did a BSc in Experimental Psychology, I was very interested in that side of things. My undergraduate project was published. I won an MRC award to do my doctorate, and the rest is history.

The cancer aspect then came later – why cancer? 

For my doctorate, I was finding ways to measure the integrity of the optic nerve in patients who had demyelinating diseases. It was way back before MRIs, and we had few ways of identifying and diagnosing things like Multiple Sclerosis until you got a multiplicity of different sensory deficits. Often, they would experience some visual problems, but conventional clinical tests couldn't measure them. I was always very interested in the progression of disease – some of my patients might have had very minimal symptoms to start with, but a couple even ended up in wheelchairs before I'd finished. The problems of chronic disease did start to hit me. 

At the time, my absolute best friend, who was only 30 and had young children the same age as mine, developed acute myeloid leukaemia. She died in the Royal Marsden Hospital, with graft-versus-host disease following a bone marrow transplant. The last time I saw her, she'd lost most of her skin. She had infections in just about every orifice, she looked like something from a science fiction movie. She looked at me, and I knew she was going to die. She said, 'You're meant to be so clever, why don't you measure something important instead of just these eyes? Why do people do things like this to patients and not tell them what could happen?' I still know the car parking bay that I sat in and cried.

About two weeks later, after she had died, I read an article in a Sunday supplement about a surgeon in London who said he thought that the psychological aspects of breast cancer were poorly understood. I just phoned up his secretary and made an appointment. He looked at my CV and said, 'This is all very interesting. But it's got nothing to do with cancer'. And I said, 'So teach me'. He said, 'Why are you here?' And I said, 'Because my best friend has just died of cancer, and I promised her I would do something different'. He said, "You need to see a counsellor. Look, I'll keep hold of your CV. If something crops up, I'll contact you'. 

As I was going out the door, I turned around and said, 'Professor, I know you think I've wasted your time. But I absolutely promise you I will find someone, somewhere in the world, who will give me a job. I know how to measure difficult things. I know how to measure things that people think are immeasurable.'

He said, 'Okay, I'll hang on to your CV'. And he phoned me up a week later.

That is quite the story. So when you became the first professor of psycho-oncology in the UK in the late 90s, what were your priorities for change in the area at that time?

Well, the landscape in cancer has been changing dramatically. Modern medicine is incredibly complex. And we noticed that some of the psychological problems patients had – their anxieties, their fears of recurrence of disease – were exacerbated by the fact they just hadn't received very good communication. We decided we would try to improve the communication skills of doctors who were talking about sad, bad, and plain difficult things with patients. 

The other thing we felt was missing was a true understanding of the impact that disease and side effects of treatment had on overall well-being, ability to function, roles and responsibilities, and so forth. The measurement of quality of life issues in new cancer treatment trials, if it was done at all, was done very poorly. So we spent a lot of time developing new, validated reliable ways of measuring this concept of quality of life within cancer trials. And indeed, some of our measures went into the biggest national and international cancer treatment trials. 

So it was two thrusts really, and to reinforce the importance of getting patient-reported outcomes, not just what the doctor thought.

Communication seems to be an underlying thread. In conversation analysis, they talk about that racetrack of conversation… at what point does doctor-patient communication veer off? Why does it happen? Lack of time, empathy…? 

It's a mix of lots of things, but I think the primary problem is that many healthcare professionals, maybe because of the way they're taught, are very scripted and inflexible. And of course, you've got very different individuals in front of you – different personalities, different levels of health literacy and numeracy. We recorded lots of things, and sometimes when we listened back we'd think 'Who do you think you're talking to?' It's a bizarre situation that sometimes, healthcare professionals understand more about the intricacies of the individual cancer cells than the unfortunate person in whom that cancer exists. 

When I say, 'You've got to be flexible, increase your repertoire, to explain the same thing to different sorts of people', people often used to say, 'But it takes more time'. We did a really important randomised trial of our communication training model, published in The Lancet. I doubt it will ever be done again, because it involved lots and lots of doctors, lots and lots of patients, I think we saw 5,500 patients by the end of the study. We videotaped them in clinic, and took measures from the patients about what they'd understood, how much information they wanted, that sort of thing. We did an utterance-by-utterance analysis of the tapes, then gave written feedback and/or a three-day course, to doctors randomised to feedback and training or control, in a two-by-two factorial design. Back in clinic, we evaluated their performance three months later, 12 months later, and 15 months later. 

If they had been on one of the courses, their communication improved significantly in all sorts of ways – expressing empathy, asking open ended, and then focusing down to more closed questions. But importantly, it didn't take them more time, because they were more efficient in their use of time. Not only did these improvements transfer into the clinic setting – which is unusual to find, when you do this kind of work – they also remained at 12 months, at 15 months. They'd actually incorporated even more valuable communication skills, because they were becoming more adept at doing all these things and recognising that it improved the accuracy of their data collection from patients. Patients are more likely to adhere to lifestyle recommendations or drug regimens if you've communicated well, and they've understood. 

That will always be the thing I'm most proud of – we changed people's skills. I still bump into doctors who went on those courses, 25 years ago, who say they've incorporated those skills and teach them to their students.

Without taking anything away from that, what about the doctors who didn't go on those courses? It must be difficult going to doctors and saying, 'we've got evidence that you're doing this wrong. Do you want to come on a three-day course?' Perhaps those least receptive to change are those who need it most?

There are quite a lot who still don't feel communication is integral to the practice of medicine… I think they should agree to only work in Pathology or Anatomy or something! But good things, valuable things, have a momentum of their own. And the first programmes we ran, because I'm a psychologist, I got heads of department, the key opinion leaders in oncology, to come. Then it was hard for people in their own hospitals to say, 'oh, there's nothing wrong with my communication skills', when the professor, the leader, was humble enough to admit that maybe they didn't know everything. The top-down bit was a valuable thing to do… a risk, but it certainly helped. 

Then we had a cancer tsar, called Mike Richards, a political appointee who had to change things within cancer. He managed to get money from the Department of Health to run a mandatory advanced communication skills programme. I had reservations – I think our model, that we had evidence for as working, got watered down, and some of the facilitators maybe weren't up to the mark. But it did mean quite a lot of people had to come on them. Sometimes when you get conscripts rather than volunteers, you've got a bit of a hard sell. That's why I prefer the other approach – get some key opinion leaders, show them that this makes a difference, and let them influence people to come along. 

What we do now is we focus our communication training programmes and workshops on key issues that doctors don't have a lot of automatic skills in. For example, a lot of people thought that communication skills training was just breaking bad news. That was never the primary problem that doctors coming on courses had. It was talking about the complexities of modern medicine to anxious people. Doctors need a meld of knowledge, and behavioural communication skills to put things in different terms for different patients. But we also need to work on self-awareness and self-confidence. For example, we know that doctors who have a high intolerance of uncertainty are likely to order up more unnecessary tests, and give patients more aggressive treatments. Just helping doctors understand their own uncertainty which nuances the communication that they have with people is a really valuable thing to do. 

What are the new things coming onto the cancer scene, that doctors are going to have the most difficulty in talking with patients about?

In our courses at the moment, we're looking at the new genomics and genetics. There are lots of ways of testing people to see whether they carry gene alterations that make them more likely to develop cancers. For BRCA-1 and 2, if you have an alteration in that, and probably about 5-10 per cent of patients will, that dictates rather different sorts of treatments for your breast cancer. But importantly, it also means your direct relatives, if they're carriers, are more liable to have ovarian cancer, or even prostate cancer. So we run lots of programmes on how to talk about gene testing, and how it affects family.

There's also something called gene expression profiling. You can measure certain characteristics of genes within your cancer cells, to help determine best treatment options. If, for example, gene expression shows that a woman with breast cancer is at high risk of recurrence then chemotherapy could be vital. Or if the gene expression shows a low risk score that means the only thing you would achieve by having chemotherapy is the side effects, so this would not be recommended. 

Talk to me about your recent film, 'They just don't know what to say or do'.

We did a survey of the lived experience of women who have metastatic widespread disease, to find out their quality of life, and what family and friends have done, as well as what doctors have done, that had either helped or hindered them. Nobody has cancer in a social vacuum – you need the support of friends and family. But when we were reading through the quotes, things that family and friends had said to them, it made you want to cry… quite honestly, it was just awful. 'You've got to die of something… I could get run over by a bus tomorrow'. Or, 'you don't want to listen to the doctors… I've been on this website and if you take these…' Or people who just couldn't address the fact that their friend had got cancer that was not going to be curable, crossing over the road and pretending they hadn't seen them. 

So we took all these quotes, divided them into different sections, and created five patient characters and filmed those actors saying these things to camera. After each section, I talk to a woman who has got metastatic breast cancer, about what's going on. We've just finished filming what the healthcare professionals said, that helped or hindered. We've got six actor-patients this time, and at the next big oncology forum in Brighton in June, I will be on stage showing different sections with a panel of three experienced doctors. 

Do the doctors recognise what they have said?

A lot of doctors will say, 'I didn't say that'. And I say 'It doesn't matter what you think you said, because that isn't what that patient heard'. So we'll often spend time with doctors explaining basic memory function, the old Bartlett stuff, recency and primacy, and effort after meaning… the patient will probably remember the first thing, they might remember the last thing and then they'll confabulate some meaning for everything in between. So check understanding before that patient leaves!

People are so different, too. If a doctor starts being chatty and friendly, some people will see that as trivialising the fact they have been sitting, waiting, to just find out what's wrong with them. And there's another thing that's also important. We've entered a new era, if you like – the paternalistic doctor shouldn't actually exist anymore. There's much more emphasis now on patient centricity, a moral, legal, social requirement to offer more information, and encourage shared decision making. We spend quite a bit of time explaining to doctors about how patients process information… you can give quite good information to somebody, but they will have a cognitive appraisal of it and they'll also have an emotional response to what you're saying. The two are intertwined. If you really understand what the doctor is saying, that might create an emotional response; but if you start from being very anxious, that's going to affect how much you can cognitively take in. Unless you've made some attempt to find out what sort of a patient you've got in front of you, you're never going to be able to pitch the information at the right level, so that they have understood the information and can engage in genuinely shared decision making. 

It's interesting that I'm sitting here thinking, that's quite a lot to ask, of busy doctors. But it's basically what we all have to do, all the time, in every interaction. Tailor your communication to your assessment of what kind of person is in front of you.

Doctors have to develop more self-awareness. People believe that medicine is a much more exact science than it really is. It's alarming for the general population to recognise this, but most 'facts' within medicine are just a result of the latest hypothesis testing that's been refined or developed as a result of research. How much of what you're talking to a patient about is really factual, and is not going to be altered by anything? It can lead to a distorted view of what lies ahead. 

One of our best papers, we wanted to call it 'Doctors feel the need to believe in miracles too'. It was looking at the way in which doctors handled prognosis with patients. Many of them were offering patients treatments that have no likelihood of changing the outcome of that patient. Rather than have the difficult conversation about the fact that 'we've run out of anti-cancer treatments, and we now need to think about supportive and palliative care', they were nihilistic about the benefits of palliative care, and instead, ordered up a new drug that probably wasn't going to work.

And they knew that it probably wasn't going to work?

Doctors are people too. If you've got this huge optimism bias, and you believe in the data from the latest journal or conference… it's not good, but I can see how it happens. 

There's another piece of work that I think is relevant here, which was picked up by The Times and then The News Quiz on BBC Radio 4. The host, Sandi Toksvig, asked 'Why might chummy doctors be bad for your health?' That was from our paper showing that doctors who liked their patient more, and engaged in lots of chitchat with them, we're less likely to be honest about prognosis. The alarming conclusion was that if you wanted to get an honest opinion about how much longer you have to live, go to a doctor who can't stand you.

That's another thing we help doctors with. They often say, 'I don't talk to patients about how long it's likely to be. Cancer is a very changeable thing'. But you're an expert. You know the data, you know the range, which should have a Gaussian distribution. A few patients will live far longer than you expected, a few will die very quickly, but the vast majority will be in that range of what is predictable. Yet every study that's ever done, shows a hugely skewed curve, revealing an overly optimistic view.

In terms of treatment, I think surgery has become a bit more humane. And there's so-called precision medicine, driven by good basic science that's helping doctors understand the type of cancer their patients have, which helps them prescribe more relevant treatments that are more likely to be effective. So it has moved on, but there's a lot more to do to help patients get through it. 

I'm going to ask a risky question. Do you ever think about what kind of patient you would be if you, heaven forbid, got cancer?

I'd be horrendous, everybody's worse nightmare! 

People fall into one of three categories. They're either very passive, trust the doctor, 'just tell me what I should do'. Then there's the patient who wants lots of information, and to determine with the doctor what treatment they want. And then there's the very active patient who wants all the information, 'thank you very much, I'm now going to go away, do my own research, talk to different people, and by the way, this is what I want.' 

What we've been so keen on is trying to help people recognise the real importance of thinking about the quality of life, not just the quantity. Usually when a new treatment is reported that might extend life by another few weeks or months, that might excite the clinical scientist, but it certainly isn't going to excite the patient if the primary side effect is chronic diarrhoea, so they can't go out, or pick up the grandchildren from school. 

So that's an area that keeps you excited for the future?

Lots of people keep asking me why I haven't retired yet, and I think it's because there's still quite a lot to do. I really want to see an end to the time where the primary outcome measures of side effects that affect patients are actually graded by the doctor. We have got lots of studies where we've shown that if you look at the doctor's gradings of tiredness or nausea or vomiting or whatever, and where the patients have answered the same questions, there's little concordance between the two. We're winning a little bit, but there are still people who are sceptical of involving patients in assessing what's happening to them.

And there are other fascinating areas, like virtual reality communication for education purposes. I've just finished this project with the Royal Society of Medicine, and an organisation called Body Swaps. I had to write some scripts on how to manage anger. That's the overwhelming emotion, that across specialties, all healthcare professionals say freaks them out big time. Even if it doesn't happen that often, it totally screws up the clinic, because you're so emotionally charged by it. And because of all the delays with the health service, anger in patients and relatives is becoming more apparent. So I wrote these scripts, and my avatar – which looks absolutely deranged – also gives the learner feedback. The beauty of them doing this in virtual reality with the headsets on is that they can come back time and time again to do it and redo it. Meanwhile, they're getting my avatar and algorithm's feedback, with tips. So unlike roleplay – which a lot of people hate and feel very humiliated by or exposed by – it allows you to get good feedback in private and keep on rehearsing it. We've just done a mini pilot with final year medical students, and they absolutely adored it, because they're all into gaming!

Any final thoughts?

The field of Psycho-oncology needs good psychologists. And it doesn't matter which branch of psychology you come from, be that social, counselling, developmental, cognitive psychology, psychometrics, any of those areas. They have all got opportunities to feed into this area. Anybody who's done psychology would have a role, because there's so much going on.