Information asymmetry

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Outside the field of medicine, for example in law and economics, information asymmetry deals with the study of decisions where one party has more or better information than the other. This asymmetry creates an imbalance of power in decision making and transactions, which can sometimes cause these decisions or transactions to go awry and cause a breakdown in trust or market failure as worst-case scenarios. Examples of this problem are (01) adverse selection, (2) moral hazard, and (3) monopolies of knowledge.

Information asymmetry extends to the field of medicine. For example, if a Pharma company has better information than regulators about serious adverse events of their newly licensed drug they may take covert actions to bypass new regulation. There are many examples of this and this undermines the effectiveness of regulation and the trust we have in the Pharmaceutical industry.

Another example of information asymmetry is what happens in the typical doctor-patient relationship. Doctors may have more information than their patients, which results in an imbalance of power in decision making. Unless the doctor takes steps to correct this information asymmetry as part of the consultation process this can have serious consequences if decisions go wrong or are even perceived to go wrong; the result is usually a breakdown in trust between the doctor and patient and can have other more unpleasant ramifications.

As a practising neurologist, I always try and correct any information asymmetry between myself and my patients, but this is not always possible given the time constraints placed on us within the NHS. Many other factors, in particular, cultural and language barriers, prevent you from correcting information asymmetry. It also plays both ways; in the modern era, patients often know more about their disease and are more up to date with the latest developments in their disease area, than their doctors. In this situation are the doctors prepared to take time to listen and learn?

One of the reasons for starting this blog was to correct information asymmetry and to create a platform for the dissemination of knowledge and how this knowledge impacts on clinical practice. I, therefore, read with interest a letter in this weeks BMJ from a retired GP and patient, which succinctly addresses the problem of information asymmetry. Do you agree with him? I am particularly impressed with his concluding sentence: The big danger of a monopoly on knowledge is just that: the absence of mechanisms to challenge it.”

If you have any personal examples of how information asymmetry has affected the management of your MS please feel free to share them with us.

Can we create a platform/mechanism to allow people like Roger Weeks and yourselves to challenge this ‘monopoly of knowledge’?

Roger Weeks. A monopoly on knowledge is bad for patients. BMJ 2019;365:l2254

Patients and their doctors should be grateful to deBronkart for highlighting the lack of access to new information about illnesses. Clearly, the advice of Abigail Adams to her president and husband, John Adams, has been ignored not just in the US but worldwide. The unlimited power of academics with a monopoly on knowledge is unchanged. The delivery of such knowledge to patients (and their doctors) at their moment of need may well not be solved by the highly unlikely achievement of open access publishing (as raised in some of the rapid responses to the commentary). Information needs about diseases and their treatment are not well served by the current patient information leaflets universally found in medication packs because they relate only to the product and to conditions treatable by the product.

As a doctor, I see that comprehensive electronic information on conditions is needed. It should include all treatments and pathways, with drug and non-drug treatments (such as physical treatments including manipulation, operations, and mind and even alternative treatments), and be accessible to all on demand. These information resources need to be as global as possible to inform patients about new developments in treating their disorder and about selected drugs. The information should be based on reliable sources, including the National Institute for Health and Care Excellence, the NHS, summaries of product characteristics, patient leaflets, Food and Drug Administration labels, and selected research papers. I contribute to work on this.

As a patient with all the latest available information on my late onset eosinophilic asthma treatment, I find great difficulty in persuading specialists to provide me with a new biological agent (with a stated 60% benefit rate), even though I can demonstrate that all their reservations are based on pre-conceived ideas, not fact. The big danger of a monopoly on knowledge is just that: the absence of mechanisms to challenge it.

About the author

Gavin

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

17 comments

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  • I have several of my friends with MS come to me with questions as to why their neuro said this or recommended that. Lots of misinformation and the more the progression, the more they are willing to try more radical and financially burdensome treatments to which they have no idea what the side effects or possible risks are. Several neuros owe me countless hours but the main aspect that I feel as if I have stolen from you is the trust. There needs to be a certain level of trust and safety in your relationship and when they tell me they trust that I will help them more than their neuro, it hurts. I try to explain that I am only explaining why the neuro said and did what they have and the action comes from you but to no avail. Maybe an added layer needs to be inserted for them to feel taken care of?

    • I once gave a talk at a pan-European neurology meeting in shared-decision making in MS. This was many years ago and I got slated by my colleagues for abrogating my responsibility to make decisions for my patients. I presented the concordance model of clinical decision making and I was derided as being weak and out of touch with reality. After the meeting, I proposed starting a blog/forum called http://www.patronising_doctors.org so that patients could share their experiences with each other around this and related issues. Based on the experience of your friend it looks like there may still be a need for it 😉

      • If you get this type of response from your colleagues what chance does the average person stand in having their questions and treatment decisions heard? I don’t know what the answer is but this phenomena isn’t unique to the UK and the NHS. I suspect it comes down to finding the right neurologist. One who you are comfortable with and one who you trust. After all, they play an essential role in the life of pwMS. Not sure how easy this is in the NHS.

  • That’s all true, but the degree of understanding by the patient must be taken under consideration. Often information isn’t perceived as it should be. The one that gives information must know who is receiving !!

    • Which is why medicine is an art and not a science and neurologists need to take time to listen, explain and listen again. I know this is easier said than done.

  • We live in a world where the ‘Doctor Knows Best’ or ‘Trust Me I am a Doctor’ is the pervasive norm. Why would medics bother to try and level the playing fields with their patients?

    • To improve outcomes? To improve job satisfaction? Happy patients make happy doctors; unhappy patients make unhappy doctors.

  • I am new to MS research with my wife newly diagnosed. What has caused us the most distress is not really knowing which treatment is the most effective. We know that some drugs carry more risk than others. But how can you make an educated decision about treatment when nobody can say that drug X is more effective than drug Y? For example, do we choose ocrelizumab, alemtuzumab, or cladribine? The risks associated with these drugs are very different but I can’t make an educated risk / benefit assessment because there just isn’t enough information to do so. Whether this is a monopoly on knowledge are just a lack of data is debatable but the end result is the same.

    With that said, I do understand that running these studies is difficult due to the power calculation and number of patients you’d have to recruit to show a treatment effect. But shouldn’t that be the price pharmaceutical companies need to pay to get their drug registered, especially if they are going to price the drugs the way they have? Shouldn’t they have to show that their drug is at least as effective as the most effective drug currently available?

      • I had read the later but not the former. Thanks. Your Beyond NEDA post supports the treatment decision we have made. Just so you know, the information in this blog has helped us greatly and has allowed us to have an educated conversation with our neurologist. I think it is doing a great deal to address the knowledge monopoly.

  • After diagnosis I found I had to pretty much ‘take on’ the medical people in order to have my voice heard. I kept reading that you have to be your own advocate when you have MS and that it is essential to research treatments for yourself by doing lots of reading. When you feel ill and pretty shocked this is a lot to ask of someone let alone if you haven’t been priviledged enough to learn how to research, know what a properly researched paper reads like … etc. Most people with MS or a close friend or relative who has it say this is a state of affairs peculiar to MS. I don’t know but it seems in MS you are both expected to do as told and not ask questions but at the same time acquire an MSc in research methods. Bewildering.

  • The fundamental issues are:

    – neurologists / MSologists do not understand the disease yet (T v B cells, inflammation v neurodegeneration, 1,2,3 diseases) so the patient is not dealing with an expert on the disease. A patient needs to know this. This is very different for a patient who is seeing a heart specialist (for example).

    – neurologists (because of the nature of most of their diseases) have sought to address their shortcomings by focusing on diagnosis. Neuro spent 30 mins telling me I had MS based on the MRI results, and 5 mins giving me leaflets on different treatments to read at home. The neuro should have asked me what I wanted (not to become disabled), my risk appetite, and recommended a treatment. The glossy leaflets didn’t help me in reaching a decision.

    – the best info a neuro has is actual experience of their patients on treatment (not on treatment). Why can’t the neuro share this real life experience ie my patients who are generally doing best are on xx treatment. Of my patients who did not take ant treatment, x per cent have had to start using a walking stick 10 years after diagnosis. This real life information is more helpful than glossy leaflets produced by pharma companies showing patients who inning through fields.

    • Even better they can present the literature to you; preferably controlled data and if not then real-life data. Unfortunately, many neurologists have biases so relying on anecdotal evidence s not a good idea.

  • Gavin, pleased you have a diagnosis but not that one. Hope early treatment may alleviate the symptoms as much as possible. Having a mother who suffered Asthma as an adult I would not wish it on anyone. However asthma or not she still lasted ‘lasted’ another 30 plus years.

    I have experienced information asymmetry (not quite sure which way though).About 20 years ago when I was first diagnosed. My results had been lost for approx. 9 months. Got a letter from the hospital which undertook the MRI scan stating the presence of demyelination.

    Upon seeing a Neurologist, he had taken the decision not to tell me, so I showed him the letter & asked about Betainterferon, his answer was ‘he did not believe in it’. Time to see a less patronising & better informed Neurologist……

  • This is an interesting way to look at the situation, and I’m extremely glad you’re at least asking the question.

    The NHS has destroyed my entire life. I can’t say I think of it as an ‘Information Imbalance’, but rather as a ‘Power Imbalance’. Or even ‘Asymmetrical warfare’.

    It isn’t that my opponent, the NHS, lacked information. I dealt with dozens of medical professionals over decades, all of whom were well educated and well paid. They also had access to massively more resources than I did and could access any medical professional with whom they wished to speak.

    So, I don’t think the problem was their lack of information.

    I believed them for a long time, but then I gathered my own information. Mostly I used the internet. Which is the big equaliser now. It always horrifies me when medical professionals tell patients not to research things themselves. No, always research.

    The intent has changed the world. It has given us equality in a way that socialism has so far failed to. Education, more than anything, is what kept the working class at the bottom of society. It was also denied to the disabled and many other discriminated against groups. That is no longer the case. Education is no longer hidden. It’s now on the World Wide Web and we can learn anything we have the energy and intelligence to teach ourselves, so long as we can afford internet access and the adapted technology we need to use it.

    So, I researched.

    The NHS was utterly convinced I was mentally ill with Chronic Fatigue Syndrome. That my symptoms were psychosomatic.

    My research told me that no, I was definitely autistic with Hypernychthemeral Syndrome and very likely Multiple Sclerosis.

    I hit the brick wall that the NHS would not listen to me, would not believe me, and would not refer me.

    Did they lack information? Well, I suppose so. Autism, MS, and neurological sleep disorders are not something that anyone I had to deal with in the NHS knew much about. I’m still shocked none of them knew of the link between Optic Neuritis and MS though, which I diagnosed myself with and then got a formal diagnosis of in 2001. The only time the NHS ever believed me.

    But I don’t think, in the end, the NHS lacking information was the problem. Because I knew. I had all the information. I spent years telling them exactly what my actual conditions were, and exactly who I needed referring to. They knew because I told them.

    The problem is the power imbalance. That they had an irrational belief in who I had to be.

    I found, that if one tells people in the NHS what is wrong with oneself, it just makes them angry. I handed a booklet to a GP once, and they reacted with anger and said they knew what they were doing.

    Another GP said that of course I think things are wrong with me if I read about them on the internet. And that me wanting a diagnosis and treatment so I felt better was ‘abnormal.’

    A few medical professionals told me that I was probably right, but diagnoses are bad for us. That’s a brick wall I increasingly hit in the NHS.

    A few GP’s told me it would be too expensive to refer me.

    But then I gave up on the NHS and started trying to get private referrals, and spent a long time being refused even those.

    The problem is that I, as a patient, was completely at the mercy of whoever I could get to see in the NHS. So, when numerous GP’s at different practices refused to refer me to a neurologist, even privately, told me there was ‘no clinical reason’ to do so, then there was nothing I could do. I would ring NHS England, and they would tell me that it’s the GP’s ‘clinical decision’, and that there was nothing I could do. PALS said the same and never helped me. The advocate for NHS complaints told me that the complains system isn’t designed to change an individual’s situation, and that GP’s could drop me as a patient for it.

    There needs to be a way for patients to appeal decisions. A separate board that one can go before and put one’s case. In my life, sadly, GP’s were the opposition. They became the enemy. And there was no court where I could go before a judge, plead my case and see who won.

    I would have put my case, with sources and evidence. But there was nothing I could do.

    Or, even better, just make it mandatory that if a patient asks for a referral, they have to be given it.

    And specialists can see patients privately with no referral, but most won’t. Why not? They’re getting paid. It’s so bizarre to me that they require a piece of paper from some horrible GP who doesn’t know me and doesn’t care. I’m the expert on myself and my conditions, but I am irrelevant. It means that there is no way a patient can access a specialist if GP’s block them. That is literally what ‘gate-keeping’ means. It means they guard the gate to keep patients out. And, in my case, they were very good at it.

    I did manage, after many years, to see the right doctors privately and prove I was right about everything.

    In the war between me and the NHS, I didn’t stand a chance. I had zero power. In the end, I had gotten myself all the information. The NHS just didn’t care. I am left literally scared, traumatised, and bitter.

    The NHS would not believe that I could be right. That my information could be correct. But it was.

    There were many, many occasions where I knew that what the NHS professional was saying was factually incorrect, not just about me but about other services and medical conditions. They were wrong about how things worked. But because of that gigantic power imbalance, me knowing they were wrong was irrelevant and there was nothing I could do.

    It isn’t a partnership between NHS professionals and patients. It’s a dictatorship. Patients are powerless.

    I couldn’t access the tests I needed, to get that information, that proof. But once I did privately, the tests results all proved that my information was correct. The MRI scan, the evoked potential tests, the lumber puncture. All indicated MS.

    Then, armed with all the correct diagnoses that I had gotten myself, we move onto the next problem: accessing treatment.

    Is the problem here a lack of information? In my case, I don’t think so.

    I know what treatment I want: HSCT or Lemtrada. The NHS won’t let me. Story of my life.

    I was told it was too late to give me any treatment. Then I was placed on Plegridy, with no say in it. Then I was offered Lemtrada and given a choice. It is so strange for me, being given choices, I’m not used to it. I’m used to being treated like a mentally ill child and not given the right to make choices and give informed consent.

    However, I was only offered Lemtrada as an outpatient. I told them that I could only manage it as an inpatient. With my disabilities, there was no way I could get to the hospital 5 days in a row for 8 am. I didn’t need care, I didn’t need food, just let me sleep on the floor in a cupboard, but no.

    I guess, this is information: I researched and found a hospital that do Lemtrada as an inpatient. I do wish the NHS had cared enough to look itself, but no. I got a referral, I can get those now that I got myself the correct diagnoses. I also got a referral for a second opinion on treatment. But Lemtrada got restricted. So now I’m anxiously waiting to hear whether anyone will let me have Lemtrada.

    As for HSCT, I suppose information plays a role in why it’s being withheld from me.

    I have read the London criteria, I got that information, and I don’t fit it because I spent decades with full-blown, severely disabling MS and no correct diagnosis or treatment, so I haven’t tried enough DMT’s, and also because I had no MRI scan until I went private, there isn’t that information trail, that history of proof of my MS and ‘relapses’.

    I haven’t managed to get the criteria for Sheffield yet, some information is harder to get my hands on, but I will. I imagine I’ll hit the same problem there.

    So, it’s the NHS’s fault I haven’t been on DMT’s, and it’s the NHS’s fault I’m so disabled and have lost so much of my brain, but the NHS doesn’t care. It won’t allow me to have HSCT and I doubt I’m even going to get Lemtrada. So, I hate myself for failing and I hate the NHS for everything it’s done to me. A lifetime of undiagnosed autism and neurological sleep disorder, and between 20 and 30 years of undiagnosed MS, while the NHS just told me I was mentally ill, and it was all my fault. But I wasn’t.

    The NHS now accepts that was never mentally ill and I have gotten myself the correct diagnoses. And doesn’t care what it’s done to me.

    With this blog, Barts are at least trying to lessen the power imbalance, I think. Interacting with patients online and letting them email. It somewhat treats us as ‘equals’. You are just people, and we are just people. I have always been treated as a peasant and the NHS as monarchs. It’s a terrible position in which to be.

    I am still somewhat shut out of the information. I don’t know what, if anything, is going on behind closed doors. I’m pretty sure my neurologist in Hull has given up on me. From their POV, they won’t allow me to have Lemtrada now it’s been restricted, and they see patients once a year, if one is lucky, and that’s it.

    I am waiting to hear if Barts will let me have Lemtrada. I did have the blood tests and chest x-ray before Lemtrada was restricted. Are conversations going on behind the scenes, or have I been forgotten? That I don’t know.

    But all those years, there was no way for me to see a neurologist, a neurological sleep specialist, or have an autism assessment, without referrals I could not get. Even going private does not solve that. Private GP’s told me they couldn’t do it. I could not find a neurologist who would see me without some random NHS GP referring me, and none would.

    I never managed to get a referral for an autism assessment before I got my diagnosis, either private or NHS, I just managed to do it privately without any referral. I did, after years of trying, manage to get a private referral to a neurologist from a GP who refused me an NHS one. Had I not managed to do it all myself, I’d still not have the correct diagnoses. The NHS was never going to do it.

    Was lack of information on their part the biggest problem? I don’t think so. I got the information, so they could have. They could have just gotten it from me. The problem is that they didn’t want to know, they didn’t care, and, ironically, they had irrational ‘illness beliefs’.

    When one is diagnosed, or as in my case misdiagnosed, with CFS, they tell one that one has ‘illness beliefs’ that are making one incorrectly believe one is ill. They say that we’re not really sick, physically we’re healthy, but we have ‘illness beliefs’. That we’re delusional. They tell us that if we’re good, if we’re obedient, if we do as we are told, we will recover entirely. Because all that is wrong with us, is we believe we’re sick, even though in reality we’re not sick at all. They tell us we’re mentally ill, and our symptoms are imaginary. That we just want to be sick. That it’s ‘biopsychosocial’. So, if we don’t recover, if we deteriorate, then it’s our fault for not trying harder and obeying. They told me: ‘At least you have your health.’

    But I was autistic with Hypernychthemeral Syndrome, and I had MS with a lot of brain lesions and ‘significant cerebral atrophy.’

    So, I did only get sicker. And I hated myself for it. Because they told me it wasn’t real. That I wasn’t really sick. I was doing it to myself and I could make it go away if I just tried harder.

    It was literally the same as being in a cult. The NHS was a cult brainwashing me.

    Is it that they lacked information? I think there’s a lot more to it than that. The NHS had irrational ‘illness belief’s’ about me.

    They had an unshakeable belief that I couldn’t be physically ill, and that I wasn’t worth the cost of referrals.

    They also wouldn’t refer me to a Gender Identity Clinic, even though they accepted I’m trans. They wouldn’t refer me into supported housing, and they did have a belief it was too expensive, and would cost more than where I am, but it would have cost less. I could have given them accurate information, or they could have found it, but they didn’t want to know. Was it indifference, or was it because they didn’t want it to come out of their particular pot of money? I don’t know.

    When they told me recently, I couldn’t be referred out of area, which isn’t true, is that lack of information? Or about money? I don’t know. When I gave them the correct information, they never believed me. I’m a patient. Worse than that, I’m severely physically and mentally disabled, neurodivergent, working class, no formal education, queer, trans, a survivor, on benefits… What I say has always been ignored by the NHS.

    But I’m autistic, I’m good at research. I’m now on Hull City Council’s Autism Board. I’m the deputy tenant representative where I live for disabled people. I’m a member of the Labour Party. I’m a published author. I’m trying to take Level 1 & 2 Maths and English, which are a step below GCSE’s. All unimpressive, I know, but I’m well aware that I was thrown away by everyone, and I’m doing what I can to be someone who is listened to and given a modicum of respect. Not that that should be necessary.

    They say that ‘Knowledge is power.’ But it’s not. To quote Cercei Lannister: ‘Power is power.’

    Weirdly, I was right about everything. My knowledge, my research, was correct. But it didn’t matter. Because the NHS professionals had all the power. That’s the problem. This is my life, and I know exactly what I’m doing. And the system is such that it did not matter. No one had to care, and no one had to listen to me, and I could not force anything to happen.

    The NHS didn’t want to know. It didn’t want the information I gave them. It didn’t listen to me. Didn’t believe me. Didn’t care. In my life the NHS has been a cruel and irrational despot. And that is how the system is designed. It is intended that the patient has no power and is 100% at the mercy of GPS’s more than anyone. That is the problem.

    Will that change? I doubt it.

    But I have achieved amazing things very much with the NHS as my enemy doing its best to stop me. Now I wait to see whether Barts will let me have Lemtrada. If so, I will manage that through sheer force of will. If it won’t, I will cry, I will hate myself for failing, I will fight a battle against the NHS that I do not have the energy and strength for and will probably lose. But what choice do I have?

    At least I will know that I have proved the NHS wrong about everything they irrationally believed about me, and that despite everything they told me: none of this is my fault.

    I would have been diagnosed many years sooner if I had been allowed to write my own referrals. And why not? I am the expect on myself. I am a writer. I was right about everything. I went through so much trauma and lost so many years, trying and failing to get GP’s to write referrals about me, a person they didn’t know, having symptoms they didn’t understand and wouldn’t even give me medications for. And I was trying to get tested and assessed for conditions they did not understand. I did. But I was not allowed to write it. Why not allow patients to write it themselves, if they are able?

    Would I have done a better job than the NHS doing my own referrals, diagnoses, and prescriptions? Horribly, I would have done an infinity better job. In the end, I did. I was also buying the drugs for symptoms that they wouldn’t give me, for decades. The same ones I now get on prescription. Because I knew what I was doing.

    Listen to patients. Let us make our own choices. Give us the referrals we ask for. Especially private ones, that don’t even cost the NHS money.

    The last neurologist I saw asked me how often I see a GP. Asked if it’s monthly? I didn’t know what to say. GP’s never ever helped me. And they won’t do home visits for chronic conditions here. Most of the time I was too ill to get there, but it was honestly worse when I did see them. They just traumatised and refused to believe or refer me. They tried to have me sectioned for ‘self-neglect’ and ‘deskilling’ myself.

    I now have the first helpful GP I’ve had in my life, largely because I’m seeing them as an autistic person with MS, and not seen as a mentally ill person pretending to be sick. But, even so, they say MS is way beyond them. My impression is that patients aren’t meant to go see the GP here except with new acute symptoms. They’d be fine with me never going back. Saves them money. And I am so afraid of everyone who works for the NHS, after what the NHS has done to me, that dealing with them extremely hard for me.

    I did always think that denying me the correct diagnoses was a way to save money, as it means one cannot access services or treatment. Though, destroying people, as I have been destroyed by state organisations including the NHS, comes with its own cost. If I were less physically disabled, less traumatised, and had a formal education, I could have done anything, been anything. I’d have paid more money in taxes than I cost the state now to begrudgingly keep me alive.

    I am in a massively better position than I ever was before. And I 100% made it happen myself. But I am just alone with all. I’m not actually seeing anyone. I hope Barts take me on, but who knows if they will. Unless I can fight and make something happen, nothing’s going to.

    So, personally, I say that the imbalance of power is a much bigger problem than the imbalance of information. But then, I’m good at research, not everyone can do that. Those that can’t? But that the NHS have thrown away? Well, you never even know they exist.

  • Without this Blog I can categorically state that I would not have known I was eligible for Alemtuzumab and would not have been in a position to state the reasons, so well backed up by facts and figures, for this being my choice of treatment.
    Instead, I would have continued to presume that there was no other treatment model than escalation, as presented to me by two neurologists. One of whom repeatedly referenced cost as a reason why my local NHS would not provide me with Fingolimod.

    Sadly, my experience has made me wary of being quickly overt with clinicians about being an informed and reasonably knowledgable PwMS due to the reactions of discomfort through to clearly being threatened by it.

By Gavin

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