Part C 03
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- C – lack of efficiency if several meanings do exist
- A – it results in difficulty to recuperate
- C – locating the harm of too much medicine
- B – chiefly based on a consensus
- C – by identifying inherent social factors
- A – having a set of special parameters
|Stacy, I thought this article was really fascinating, not least because after years, maybe decades of debate on the downsides of medicine and overdiagnosis, it seems quite incredible that we don’t quite know what we’re talking about still. And you seem to have been working hard to really try and understand and define what too much medicine is. Can you set the scene for us a bit and tell us how you got into this and why it’s important to try and define these concepts?
|Stacy Carter :
|Yeah, absolutely. So, As you know, Helen, this paper kind of started with a really interesting experience at the second International Overdiagnosis, well, Preventing Overdiagnosis Conference. We all talked about overdiagnosis animatedly for three days and we had a sense of solidarity and we agreed that this was a problem and it needed to be fixed. And then on the fourth day there was a special invitation-only meeting of experts. So just just people that were really engaged with research about overdiagnosis to try and set the research agenda for the next 12 months.
And the very first session was called, I think, nailing down the definition of overdiagnosis. There was two hours devoted to this session. And so these are all people who have been thinking about overdiagnosis a lot. And it became apparent within the first 15 minutes that there was no way that we were going to nail down a definition of overdiagnosis that way that day, because everyone was using the word in a slightly different way.
So we all have this general shared intuitive sense that we were all interested in the same problem or similar problems or related problems, but we weren’t completely clear what we meant when we said this word, overdiagnosis.
So we came away from that meeting, really motivated to try to unpack why that could be; why these very well intentioned, very smart expert people were not using this word in exactly the same way.
|And why is it important to have clarity on that word? What’s it stopping us doing or what conversations can’t we have without its definition?
|Stacy Carter :
|I think overdiagnosis is such a difficult thing to approach in policy terms, in clinical terms and I find even just talking with my friends about overdiagnosis, it’s quite counterintuitive. And it can be very difficult to talk about in a way that convinces people that it is a problem that we need to do something about. I think if we’re not clear ourselves what we’re talking about, it becomes very difficult for us to be clear with policymakers and with the general public that this is a problem that we need to do something about.
And we also, if we’re not clear, I think we potentially waste a lot of energy within the research and clinical community talking across purposes. If we’re all using the word to mean different things and talking past each other, we waste a lot of energy. But if we can be clearer amongst ourselves what exactly this problem is that we’re trying to solve we’ve kind of, we’ve leaped the first hurdle towards trying to solve the problem.
And the problem really, I think the people that are focused on the problem of too much medicine are really mostly concerned that medicine is harming people when it doesn’t mean to. And that we’re allocating resources in a way that doesn’t get the best benefit for the people who need medical care. So it’s motivated by good reasons, wanting to prevent harm and wanting to make sure that there’s the maximum amount of benefit. But until we’re clear exactly on what overdiagnosis is, it’s hard to achieve those things that we’re trying to achieve.
|And what are the key themes that emerge? Because I went to some of your sessions and you might think walking into the sessions at the conference that overdiagnosis is quite a numerical black and white issue.
But actually the set up of this article, you explain that it’s actually far more complicated than that and to an extent, overdiagnosis, or too much medicine is in the eye of the beholder and there’s a lot of judgment and ethics and messy stuff in there. Tell us a bit about that.
|Stacy Carter :
|It’s true. So part of the challenge of overdiagnosis is that it’s a really complicated scientific problem. So there’s amazing people including my colleague Alex Barrett, who you’ll be speaking with later, who have dedicated many years of their career to trying to work out how to produce accurate, trustworthy scientific measurements of the size of overdiagnosis.
So it’s definitely a scientific problem, but we can’t reduce it just to some kind of ideal of value free science, where we just get the maths right. And then we know how big it is, and then we know what to do. And the reason for that is that overdiagnosis is fundamentally about, or too much medicine, is fundamentally about trying to identify the situations in which medicine is doing more harm than good or medicine is not delivering any benefit.
|Stacy Carter :
|And as soon as you start talking about harm and benefit, you’re in the realm of ethics, you’re in the realm of weighing up goods and bads, and as soon as you start talking about harm and benefit, you have to ask, as you said, from whose perspective, so whose ideas about harm and benefits should matter when we weigh up whether to do a particular test or whether to offer a particular drug. Should it be the patient’s assessment of benefit and harm? The clinicians, researchers, all of them? If they disagree, how should we adjudicate between them? If there’s different benefits and different harms that all have to be weighed up, then how do we do that waiting?
So that’s moral territory. It’s ethical territory. So that needs to be a conversation that is quite explicit and a conversation that brings in citizens, that brings in the public, which is why it’s so important to have good public conversations about too much medicine.
And if we want to address “too much medicine” we also need to recognize that it’s a social problem. You know, this is a problem that comes from the social systems that we humans create for ourselves. So, it’s driven by things like clinicians who are pushed and pulled by incentives and penalties in the systems that they work in, and clinicians who feel threatened by medico-legal threats to do more testing and to make sure that they have covered every base or companies who are required to make a profit and so they might sell tests or sell drugs harder than they should to try and make more money, or things like the increasing rise of direct to consumer selling of tests like genomic tests. So, you know, spit in a vial and send it off in the post and you can get information about your genome sent back to you in a couple of weeks.
So these social forces are an important part of what creates overdiagnosis, what motivates and what drives it. So if we’re going to be able to address it effectively, we’ve got to acknowledge and take seriously that social aspect of overdiagnosis or “too much medicine.“
So the science is critical but the ethical and social dimensions are just as critical and in fact should feed into the science if it’s going to be good science.
|So setting out these definitions must have been no easy thing and it sounds like there’s a huge grey zone in terms of how we’re going to be able to think and deal with them.
In your article, you’ve got an enormous table, I guess informed by the opinions of all these different experts who are feeding in their thoughts, about what overdiagnosis was. Can you explain for the readers some of the some of the broad themes that are in there?
|Stacy Carter :
|Yeah, absolutely. So what we tried to do was to get to the bottom of a difference, actually, because when we thought about why those well intentioned, super smart experts in that room couldn’t agree on what overdiagnosis was, we concluded that it was possibly because they were using that word at two different levels of generality.
So that some of those experts were using the word overdiagnosis in a very specific way to mark out a very specific concept. And we argue in the paper that this is how the word overdiagnosis should be used, that we should start restricting it to a narrow sense.
And that sense is really about the boundaries of the definitions of conditions. So the narrow sense of overdiagnosis, which is the first line in our table, is when a person is diagnosed with a condition, but that diagnosis doesn’t produce a benefit for that person.
So it’s a very particular problem, and it’s about rethinking the boundaries of diagnostic categories and thinking about those boundaries not in terms of can we make sure that we find every case, or can we make sure that we treat every person, or can we leave no stone unturned, but instead, it’s about thinking, what will the benefits be? What will the harm be? How can we weigh them up against each other? How can we be sure that the benefits are likely to outweigh the harms?
So, that concept of overdiagnosis is quite narrow, quite specific, and (it’s labeled) it really needs to be. Yeah, it is. It’s about when is it a good thing to label this person? So when is it likely to benefit this person to give them this label?
And it really has to be negotiated condition by condition, because that decision obviously has to be made in collaboration between the clinicians and the patients and the researchers that are working on that very particular problem. So, overdiagnosis, in that narrow sense, we are arguing in the paper should be the only way that we use the word overdiagnosis. And we’ve adopted the BMJ term, “too much medicine” to encapsulate a whole lot of other problems that are related to, but not the same as.