Monday, June 17, 2024

Charlotte Blease | Challenging Medicine

by Domhnall

“The Healthcare Gadfly”

The term Gadfly comes from Socrates, in the defence of his life. Its about asking difficult questions, challenging the status quo, testing perceived wisdom. 

Dr Charlotte Blease is a philosopher and interdisciplinary health researcher. She is an Associate Professor at the Department of Women’s and Children’s Health, Uppsala University, Sweden and Research Affiliate at Digital Psychiatry, Beth Israel Deaconess Medical Center, Boston. Prior to this she was based at Harvard Medical School for five years and has held academic posts in Europe and the UK.

She has a diverse publication portfolio of more than 120 journal articles across digital health, evolutionary psychology, health psychology, philosophy, and ethics. Among her expertise is placebo studies, the role of artificial intelligence in undertaking clinical tasks, and online record access. In February 2024 her co-edited volume “The Nocebo Effect: When Words Make You Sick” was published with Mayo Clinic Press. She is also writing a book on AI and the psychology of the medical appointment for Yale University Press.

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“…it’s always been on the fringes which isn’t always an easy place to be. But I suppose that’s the philosophical training. You’re something of an outsider asking the kinds of questions that experts sometimes forget to ask.”

Speaking at TEDx UCD

As a philosopher you sit on the interface between philosophy and medicine. Tell us about your career and how it developed.

Charlotte Blease: Yes, it’s been an interesting journey. I did a Ph.D. in Queen’s University Belfast on the philosophy of science back in 2008, and lectured there for several years in philosophy. But I think I always knew my interests were quite practical and I liked asking challenging and difficult questions in different fields, and particularly with my interest in science and medicine.

Increasingly I was looking beyond the traditional lectureship job and got very interested in a field called placebo studies, which was quite a young field. I went to a conference in Switzerland in 2012 where there were probably about 30 people in the room from all different disciplines talking about this mind body effect, how to measure it, the ethics of it and it was absolutely fascinating.  From that moment on, I was hooked into being a philosopher thinking about medical issues. I felt we could do interesting work and I started to work in a much more interdisciplinary way, and I moved about a bit.

I was at University College Dublin and then at University of Leeds where I was in the medical humanities department working on various things, and then spent five years at Beth Israel Deaconess Medical Center, and just now I’m at Uppsala University in Sweden. 

DMacA: Let me stop you there for a moment, because I’m really interested in the type of work you did in in Dublin, in Leeds, and particularly in America, because that must have been really interesting.

CB: It really was. In UCD, in Dublin, I was interested in applying what I’d learned so I did a postdoctoral research, funded by the Irish Research Council, and I was based in the School of Philosophy, asking questions about how to apply placebo studies in psychotherapy- what constitutes a placebo in psychotherapy in clinical trials? There’s even an idea that psychotherapy works as a placebo. What does that mean and what are the implications for training psychotherapists or clinical psychologists? What should we tell patients about this? So that was my research obsession for a couple of years.

In Leeds I was focused on medical humanities.  My work addressed a different topic as these were based on pockets of research funding, where I was looking at the role of medical humanities in medical education. There is this idea that doctors should be more cultured, they should be reading literature and looking more at the humanities.  But, I asked the question why? Because doctors are already over worked, the medical curriculum is already over stuffed. What is the justification? Again, I was asking outsider questions of a particular field.

I came back to UCD, then applied for Fulbright funding to go to the United States to work with the program on placebo studies, which was very interdisciplinary, based at Beth Israel Deaconess Medical Center, one of Harvard’s 17 teaching hospitals. So the trajectory has been opportunistic, I would say, but it’s always been on the fringes which isn’t always an easy place to be. But I suppose that’s the philosophical training. You’re something of an outsider asking the kinds of questions that experts sometimes forget to ask. And, its not always welcome. I’m not territorial over who’s a philosopher. I’ve met very many philosophically minded doctors, psychologists, whoever. I work in quite a cross-disciplinary way when I’m thinking about these different real world problems.

Recently, at Harvard I got interested and started to work with another kind of outsider research group, which was, looking at shared access to the online health record, the electronic health record. What happens when patients read what the doctor’s written about them? I got very involved in that and met my current colleague, indeed, my boss effectively, at Beth Israel, who’s Swedish. Being an opportunist I made the move to Uppsala University and am working on digital health there, too.  

So, I’ve had various different kinds of projects over the years. Placebo studies has been one.

Another is health professionals’ attitudes towards digital technology, machine learning, their awareness of different digital products.  But also online record access- what happens when patients actually look at their own records? Is it a good thing? A lot of people say it is. I think there is a lot that’s great about it but I don’t think we should skirt over the potential challenges. All innovations have challenges.  Again, being true to my philosophical roots you have to ask the difficult questions and push back a little bit on ideas

 

 

 

 

“We tend to think knowledge is empowering but the nocebo effect is this disruptor in medicine because it invites this ethical dilemma of more information but at what cost?

…It’s an interesting research question to ask, could access to medical records literally cause harm. I think that’s an interesting proposition”

DMacA: Taking this slightly different view of access to medical records, which is something you’ve written about, what do you feel this open medical record adds to, takes away from, or can cause problems relationship between doctors and patients?

CB: It’s a great question. On balance. It’s a good idea. Ultimately, it gets down to this issue of who owns the records. The medical record served as an aide-memoire for the doctor. It was a tool to aid their thinking, and also to share information with other clinicians. But when you invite patients in, it’s a medical duty to be transparent, honest, and open with patients. In a sense, you’re following through with that, which is a good thing.

But here again, what are the implications in practice. Let’s look at the patients side. In the United States, where access to records has been ongoing for quite a long time, and patients have mandatory to access according to federal law, except psychotherapy, clinical notes, patients report a lot of benefits.  They better remember their care plan, they remember to follow up on test results and referrals. It helps close that feedback loop on care. They spot errors in their notes.  Something like one in five patients found errors- things like wrong family history, wrong notes, wrong sidedness, things that could have potentially downstream harmful effects. So patients report these benefits. They also report trusting their provider more.

On the other side, doctors and other clinicians are very wary of this because there’s something a bit unnerving.  This is an additional thing you have to worry about in an already overworked, overstressed profession, and there is a worry that you have to change what you’re write to make the notes more accessible. Something like SOB, shortness of breath, FU, follow up.  Acronyms like that can be misinterpreted never mind the medical vernacular with phrases like – the patient denies – which can sometimes read like a police report if you’re not used to that kind of vernacular. So ideally, doctors would change what they write. But it’s got to preserve that accuracy and the richness, of the clinical information.  You don’t want to dumb it down. So again, going back to surveys in the United States, of the largest surveys undertaken, of 1600 clinicians, who had at least a year’s experience, over 23% said they were changing how they write the differential diagnosis. Around 1 in 5 said they believed their documentation was less valuable for other clinicians.  So we also have to consider, even if doctors really don’t need to change what they write, they will perhaps over worry about patients accessibility.

We still have to consider doctors might be doing this, what do we do to about it. All innovations have issues, so how do you resolve these emergent challenges? How do we work around that?. It becomes one of those things that – ‘ doctors just need more education’. But, was it Danielle Ofri who said that doctors are like geese, stuffed for foie gras, they don’t need yet more. So this is where technology starts to come in because generative AI,  ChatGPT and all the rest have potential. I’ve done some research on that and these are the kind of tools that could be used to summarize clinical information, unpack those acronyms and potentially translate it into a more patient friendly vernacular.

It’s about thinking about things in a broader context than just the particular the innovation being a good thing.  We can all get on board with it being a good thing. Doctors believe it’s a good thing. In some sense that’s easy. But then what? What are the unintended consequences?

 

“…what happens when patients actually look at their own records? Is it a good thing? A lot of people say it is. I think there is a lot that’s great about it but I don’t think we should skirt over the potential challenges. All innovations have challenges.  Again, being true to my philosophical roots you have to ask the difficult questions and push back a little bit on ideas.”

Speaking on BBC Radio 4 The Medicine Game. Charlotte Blease gives a talk questioning the relationship between doctors and patients.

Radio 3 Free Thinking 2012

DMacA: It was interesting listening to your talk about the medical record in the context of honesty and transparency. You have another research interest in the placebo, which isn’t quite honest and transparent. And you’ve published a book recently. Tell me a bit about that.

CB:  The book is actually on the Nocebo effect. So, if the placebo effect is this idea that, patients or indeed an individual expects a treatment to be effective, they experience a genuine mind body effect as a result of that expectation such as a dialling down of pain or, feeling less anxious or less depressed, or these sort of self-reported symptoms. The placebo effect, we tend to think is a good thing. But not the nocebo effect, and there is much less research into the nocebo effect. It’s regarded as the evil twin of the placebo effect. So here again is the idea that you expect, or you anticipate a treatment to have nasty side effects. You don’t think it’s going to work or you’re anxious. And, as a result of that negative expectation, you do actually genuinely start to experience some adverse symptoms.

I’ve looked at this idea in respect of the electronic health record. If we take seriously the idea that a lot of these studies demonstrate that verbal suggestions, how you frame information, can work either to promote therapeutic benefits via the placebo effect or they could actually make people feel more anxious, in experiencing a nocebo effect, it makes sense. No empirical studies have been undertaken on this, but it makes sense to anticipate that if, in the electronic health record, there are some positive verbal suggestions or encouraging wording, or there’s negative stuff or indeed that patients just better understand the side effects of treatment. Patient surveys show that when people read their records, the have a better grasp of the treatment side effects, they have more time to take in information and can pore over it. There is this potential unintended consequence, and where transparency comes up against this, is that too much information may sometimes be a bad thing.

We tend to think knowledge is empowering but the nocebo effect is this disruptor in medicine because it invites this ethical dilemma of more information but at what cost?

There isn’t as much research into this. The effect sizes aren’t always that big. Yet, patients don’t want to feel ill, they don’t want to have side effects. One of the main reasons people don’t take or stop taking medications is because of side effects. So you do want to reduce the vulnerabilities.

It’s an interesting research question to ask, could access to medical records literally cause harm. I think that’s an interesting proposition

 

“This is an additional thing you have to worry about in an already overworked, overstressed profession, and there is a worry that you have to change what you’re write to make the notes more accessible. Something like SOB, shortness of breath, FU, follow up.  Acronyms like that can be misinterpreted never mind the medical vernacular with phrases like – the patient denies – which can sometimes read like a police report if you’re not used to that kind of vernacular.”

DMacA: Now, let me change tack a little bit, because you’ve been recognized by BBC Radio Three as one of the ‘New Generation Thinkers.’ Tell us about that.

CB: That was back in 2012 and it was a competition for junior researchers and academics to submit ideas for a radio broadcast and to do some simulated radio interviews on different topics.  It was in Manchester. It’s a skill that is involved in teaching and, within the academy, that you should be able to communicate in plain language the things you’re doing.  And, from a research perspective as well, because very often it’s the taxpayer funding these academic projects. And if you’re not communicating back to the people who fund what you’re researching, I just think that from a civic perspective, that’s unfair. There’s a certain accountability and, to some extent, a duty to be able to communicate what it is you’re working on, why it matters, to be able to say why. That was a useful experience for me to get into the habit of talking a little about conducting research, the what and why I think it’s interesting.

DMacA:  Now, finally, let me ask you a question relating to your website because you describe yourself as “The Health Care Gadfly. What does that mean?  (https://www.charlotteblease.com)

CB: The Health Care Gadfly comes from Socrates, and his defence of his life. He defended what he did as being a gadfly. A gadfly is somebody who is annoying, irritating, disrupts the status quo a little bit and is somewhat pestering in asking questions. And I think philosophers do that. There are many people who are gadflies. You don’t have to have a philosophy PhD, so I think it would be a bit pretentious to say you needed one. But I think being a gadfly is very useful and particular fields should invite the gadfly mentality. But I started to realize that on some occasions I was irritating people. There are better and worse ways to be a gadfly. But, anyway, they are useful people to have around research groups.

As I said, I’m a philosopher who works in medicine and so I would characterize myself as that and I’m finding a lot of like-minded gadflies out there to work with. For example, the Open Notes research team that I worked with. The idea that patients should read the records, is a fairly ‘out there’, subversive, idea. It’s that kind of mentality – doing or asking the things that may be a little bit challenging.

DMacA: Charlotte, I just love your work as a disruptor, challenging medicine. We need more people like that.  Thank you very much for talking to us today. Thank you so much for inviting me.

 

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