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.
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 😉
“I was derided as being weak and out of touch with reality.”
When in realty..they were.
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?
You may want to read my post on Beyond NEDA and on NEDADI.
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……
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.