This is, as always, an important piece for many reasons. There are so many conditions that don't seem to be on the current medical radar, perhaps due to a lack of funding. Telling the patient that their symptoms are psychosomatic is like the Medieval physician saying that God made it that way, so suffer. It stops all discussion on the issue and leaves the patient in limbo. Thanks, Nita, for clarifying some of these issues.
Definitely, doctors often dismiss patients because they see medical mysteries as an assault on their identities. “The issue can’t be my ability, so it must be the patient.” These attitudes are literally incorporated into medical school curricula.
Such an informative piece! I'm glad that through these posts you are bridging the gap between experts and people to help make these conversations more accessible.
Thanks for sharing. Your post also makes me think of the social determinants of health, and the many gaps outside of the health system that translate into unequal health outcomes.
This is particularly true for people with substantial chronic diseases and disorders that medicine does not yet understand. The one I am most familiar with is currently called severe or profound autism. Any doctor can look up autism in UpToDate and see exactly what I mean.
In practice, doctors see someone with severe autism, decide there is nothing they can do, and declare in so many words, "What do you expect? They have autism."
I see very little interest or effort in actually understanding what is needed.
I became an epidemiologist with the goal of making a real difference here. It's a VERY long, tough slog.
I have one more thought for you, which you probably can't use in your writing. 35 years ago a special interest openly created and funded a small Washington DC "nonprofit" "research institute" which started with the mission to get the courts to believe expert witnesses who said a particular complex chronic condition I have is always anxiety or phobia (or other psych), and to exclude as fringe expert witnesses who said the condition is physical. It worked. This provided a particular industry and its customers 25 years of absolute immunity to product liability lawsuits claiming their product caused the condition my family and I have.
The "nonprofit" carefully and selectively funded real research, published in real peer reviewed journals, by psych fields, on this condition. That overwhelmed the very thin existing research in the field, and created the illusion of science coming to consensus that the condition is always psych. 30 years later, a national health service blue ribbon commission will look at this science literature and believe that "consensus". The delicensed psychiatrist, tobacco industry veteran, and expert witness industry veteran (that's all one person) who led this effort was also relentless in his advocacy of the "these poor, poor patients with this anxiety or phobia" talking points to policymakers, those who fund grants, leaders in medicine and medical professionals, and to the public. Again, it worked.
This kind of advocacy and selectively funded research has been done at least twice on separate conditions, and probably more often, in my lifetime.
The "all Long Covid is FND" PR campaign which started in mid 2022, coinciding with a major private US disability insurer writing fine print into its policies to exclude conditions ever diagnosed with anything in any edition of DSM (FND is in both ICD and DSM) is likely a third.
Special interests seem to be putting those cracks into our healthcare system for financial advantage from time to time.
Yes, the idea that what is not measured can effectively disappear inside the system is both sad and painfully true. So many patients are left in that gap between lived experience and institutional proof. I am curious what you think matters most now: better diagnostics, better study design, or a deeper change in medical culture? Or it will be forthcoming in your future publication?
Thanks for the question, Dr. Mekhovich. I believe the problem is largely systemic, both due to the psychology around physician identity entrenched in medical school curricula (I discuss these phenomena on my newsletter on the Semmelweis reflex) as well as reductionism and medical specialization, which often fall short in the face of complex chronic illnesses that affect multiple systems simultaneously.
Platform trials could help better stratify patients and distinguish responders from non-responders. I would love to know your thoughts as a researcher and lawyer too.
Ah, with that question you’ve found the edge of my expertise as an in-house biopharma IP lawyer. I’m much more familiar with the single-asset path than with trial designs evaluating multiple interventions in the same disease area; that work was usually outsourced. Still, the larger US problem seems to me less methodological than structural: the patient is multisystem, while the system prefers billing codes, specialty silos, and tidy categories. I’m very interested in your Semmelweis reflex piece.
Good luck with the new incarnation. Ironically, I have developed a rare disorder of my own, only 1 in 50,000 people get it and few of them men. Fortunately, the Dx and treatment are clear, even though the ultimate cause is not (yet). Hopefully, some MRIs will reveal something.
Yes, I am seeing doctors at Johns Hopkins University Hospital. They seem to be very good. It's not a life-threatening illness and we caught it before it could do any real damage to my body.
I know we have talked before about physicians' limitations in managing uncertainty and other things. This writing also makes me think about how the relative ease or difficulty of measuring things shapes care.
For example, with the advent of the electronic medical record, it became very easy to measure the time it takes for something to happen (where as before you would have had to have someone follow a patient or physician with a stopwatch).
Because it is now easy to measure, it has become one of our main quality metrics for sepsis, stroke, MI, etc. These are time sensitive conditions, but receiving a CT or treatment within a certain windows does not necessarily mean the care is high quality, nor is the converse true. For example, if a stroke patient is given lyrics within the time window, but would have declined treatment if they had been given appropriate informed consent, that is not good care.
I think there are a lot of examples of this, where because something is easy to measure, we have inflated it's importance as a quality metric.
This is, as always, an important piece for many reasons. There are so many conditions that don't seem to be on the current medical radar, perhaps due to a lack of funding. Telling the patient that their symptoms are psychosomatic is like the Medieval physician saying that God made it that way, so suffer. It stops all discussion on the issue and leaves the patient in limbo. Thanks, Nita, for clarifying some of these issues.
Definitely, doctors often dismiss patients because they see medical mysteries as an assault on their identities. “The issue can’t be my ability, so it must be the patient.” These attitudes are literally incorporated into medical school curricula.
While I wish that were not true, it is.
Such an informative piece! I'm glad that through these posts you are bridging the gap between experts and people to help make these conversations more accessible.
Thanks, I hope this will be a space where people can comfortably have those difficult discussions.
Thanks for sharing. Your post also makes me think of the social determinants of health, and the many gaps outside of the health system that translate into unequal health outcomes.
Agreed, and the disparities in SDOH are especially stark in the states compared to our European counterparts.
This is particularly true for people with substantial chronic diseases and disorders that medicine does not yet understand. The one I am most familiar with is currently called severe or profound autism. Any doctor can look up autism in UpToDate and see exactly what I mean.
In practice, doctors see someone with severe autism, decide there is nothing they can do, and declare in so many words, "What do you expect? They have autism."
I see very little interest or effort in actually understanding what is needed.
I became an epidemiologist with the goal of making a real difference here. It's a VERY long, tough slog.
Well said, and well written. Thank you!
I have one more thought for you, which you probably can't use in your writing. 35 years ago a special interest openly created and funded a small Washington DC "nonprofit" "research institute" which started with the mission to get the courts to believe expert witnesses who said a particular complex chronic condition I have is always anxiety or phobia (or other psych), and to exclude as fringe expert witnesses who said the condition is physical. It worked. This provided a particular industry and its customers 25 years of absolute immunity to product liability lawsuits claiming their product caused the condition my family and I have.
The "nonprofit" carefully and selectively funded real research, published in real peer reviewed journals, by psych fields, on this condition. That overwhelmed the very thin existing research in the field, and created the illusion of science coming to consensus that the condition is always psych. 30 years later, a national health service blue ribbon commission will look at this science literature and believe that "consensus". The delicensed psychiatrist, tobacco industry veteran, and expert witness industry veteran (that's all one person) who led this effort was also relentless in his advocacy of the "these poor, poor patients with this anxiety or phobia" talking points to policymakers, those who fund grants, leaders in medicine and medical professionals, and to the public. Again, it worked.
This kind of advocacy and selectively funded research has been done at least twice on separate conditions, and probably more often, in my lifetime.
The "all Long Covid is FND" PR campaign which started in mid 2022, coinciding with a major private US disability insurer writing fine print into its policies to exclude conditions ever diagnosed with anything in any edition of DSM (FND is in both ICD and DSM) is likely a third.
Special interests seem to be putting those cracks into our healthcare system for financial advantage from time to time.
Yes, the idea that what is not measured can effectively disappear inside the system is both sad and painfully true. So many patients are left in that gap between lived experience and institutional proof. I am curious what you think matters most now: better diagnostics, better study design, or a deeper change in medical culture? Or it will be forthcoming in your future publication?
Thanks for the question, Dr. Mekhovich. I believe the problem is largely systemic, both due to the psychology around physician identity entrenched in medical school curricula (I discuss these phenomena on my newsletter on the Semmelweis reflex) as well as reductionism and medical specialization, which often fall short in the face of complex chronic illnesses that affect multiple systems simultaneously.
Platform trials could help better stratify patients and distinguish responders from non-responders. I would love to know your thoughts as a researcher and lawyer too.
Ah, with that question you’ve found the edge of my expertise as an in-house biopharma IP lawyer. I’m much more familiar with the single-asset path than with trial designs evaluating multiple interventions in the same disease area; that work was usually outsourced. Still, the larger US problem seems to me less methodological than structural: the patient is multisystem, while the system prefers billing codes, specialty silos, and tidy categories. I’m very interested in your Semmelweis reflex piece.
I agree with your assessment, and it’s informative to see how different professions view different problems in healthcare. This is the link to the Semmelweis piece: https://nitajain.substack.com/p/their-data-shouldve-transformed-medicine
Good luck with the new incarnation. Ironically, I have developed a rare disorder of my own, only 1 in 50,000 people get it and few of them men. Fortunately, the Dx and treatment are clear, even though the ultimate cause is not (yet). Hopefully, some MRIs will reveal something.
Take care.
I hope you have a competent and supportive healthcare team behind you as you navigate the new diagnosis.
Yes, I am seeing doctors at Johns Hopkins University Hospital. They seem to be very good. It's not a life-threatening illness and we caught it before it could do any real damage to my body.
I know we have talked before about physicians' limitations in managing uncertainty and other things. This writing also makes me think about how the relative ease or difficulty of measuring things shapes care.
For example, with the advent of the electronic medical record, it became very easy to measure the time it takes for something to happen (where as before you would have had to have someone follow a patient or physician with a stopwatch).
Because it is now easy to measure, it has become one of our main quality metrics for sepsis, stroke, MI, etc. These are time sensitive conditions, but receiving a CT or treatment within a certain windows does not necessarily mean the care is high quality, nor is the converse true. For example, if a stroke patient is given lyrics within the time window, but would have declined treatment if they had been given appropriate informed consent, that is not good care.
I think there are a lot of examples of this, where because something is easy to measure, we have inflated it's importance as a quality metric.