I have mast cell activation syndrome. I have spent the majority of my 73 years with my multi-system symptoms and bizarre (but benign) growths. I understand that it was only recognized in 2016. MCAS is a complex disorder with difficult testing, and that virtually no physicians are trained that this syndrome even exists. I was lucky enough to be referred to the pre-eminent expert on MCAS. But despite the fact that I was lucky, I am on a FB group with hundreds of people who have- or believe they have MCAS. They are terrified. And from my own experience and theirs, there is little sympathy in our doctors’ offices for a complex disorder for which there is little reliable testing and no standard treatment. We have been labeled “depressed” or “hypochondriacal” and even “fired” from their practice. We have made frequent ER visits with anaphylaxis’s. I volunteer for teams of medical students, to teach them about MCAS and the experiences people with chronic, complex diseases have - and they confirm that none of their professors have spent more than 10 minutes on such topics. Doctors are obviously uncomfortable with their lack of knowledge but they are not focusing on the fears and limitations of our lives. Perhaps if AI had been able to determine an initial diagnosis, patients AND physicians could relax enough to listen and offer that extra care you describe. I hope AI can help.
It’s so sad how commonly people’s symptoms get dismissed my doctors. It’s the system. It doesn’t allow doctors and patients the time they need to listen and understand and to be understood. I’m hoping technology can help but it’s going to take a lot more than hope alone! Thanks for sharing this with me.
I love your newsletters. Read everyone and share so many. I happen to be looking for a new doctor, but you’re not even close to my community. My point is… How is it that you have the time to sit with people to really clue in on what’s going on, and to connect, as well as all the diagnosing and treating? What’s the key that I’m asking for when I interview new physicians? TIA
HI Judy - Thanks for the kind words and for sharing my writings! In order to have the time I need with patients, I have built my own practice and have a smaller patient panel than most doctors - with a direct primary care or "DPC" model to ensure my patients' needs get met. My hope is that someday, perhaps with the help of technology, everyone in this country has access to a doctor who knows their name, not just their diagnoses. :)
Thank you so much for responding. It sounds like you have what we call here … concierge doctors. Is that the same model? Maybe I need to check into that more. My understanding of this model is that it is not covered by insurance and I already see a lot of private pay, holistic type practitioners.
Shame is a biggie. I have a now ex-doctor who I thought was very good, but the prevailing emotion I felt in our appointments was disapproval. She lived rent free in my head for a few years. I felt like whatever I did was never good enough. I complained to friends, most of whom suggested I find another doctor. When she changed to a concierge type practice, I took the opportunity to opt out. No regrets.
I've been fortunate. I celebrated my 80th birthday at the end of January in good health, so I haven't had the deep personal experience with the medical system that many people have had. I work to maintain that with lifestyle: diet, exercise, low stress, etc. My observations are from other people as well as what I have read.
What I have observed is that doctors seem to on a treadmill, and that there is a crucial shortage of them. I think there is a deep dysfunction in the medical system and that this has been deliberately caused by those who value lucrative financial return over concern for human well-being or basic human decency. The principle culprits include the pharmaceutical industry and their FDA regulators (captured via the revolving door, which should be eliminated) which through their influence on medical education maintain a palliative system that maximizes their customer base rather than a functional system where "health maintenance" means what the words imply; organized medicine that severely limits the supply of medical school graduates to keep medical salaries high; insurance companies that use their political influence to maintain in the U.S. a decrepit system based on private medical insurance and avoid adoption of a universal health system (resulting in the most expensive health system in the world, but a current ranking in health statistics that puts us in (I recall) about 46th place among nations); a "big food" system including agriculture, food processing, and its captured Agricultural Dept., that maintains the "Standard American Diet" (with its appropriate acronym, SAD), particularly maintaining a level of sugar consumption that is chronically toxic.
Fortunately, a great constellation of technological disruption appear to be in process to change this dismal situation. A non-profit thinktank called RethinkX has produced studies of several categories of disruption, the most relevant to medicine being Food and Labor. The disruptive food technologies are Precision Fermentation and Cellular Agriculture. These should deal with the Food component of our current problem. Labor involves advances in AI combined with Robotics, which will address issues related to the medical system. AI advances are explosive, moving rapidly toward Artificial General Intelligence (AGI) and then Artificial Super Intelligence (ASI). I believe the limitations of AI you imply will be temporary. One of the most important areas of development will be the "Omic" of metabolism. Metalomics with involve the comprehensive modelling of metabolic processes--first at the cellular level, but advancing to mastery of metabolism of the human body as a functional whole. This will involve individual variations based an DNA. (In time, when its accuracy has been verified, the long Stage-3 FDA trials for safety and efficacy will become unnecessary.)
Various researchers of the human aging process foresee a coming Longevity Escape Velocity when applications will advance life expectancy by more than a year per year, so that time will be "running in" instead of running out. Some forecasts are for LEV by early in the coming decade. I'm looking forward to it.
Thank you for this!!! I think you are spot on in naming the layered, complex problems that keep patients from getting the care they need and doctors from dispensing it. I hope you are right that AI, if use well and integrated with the very human experience of being alive, will help people get the care (and sense of agency) they need.
“Imagine visiting your doctor knowing that AI has already reviewed your lab results, analyzed your symptoms against vast databases of medical knowledge, and flagged potential concerns that deserve human attention. Your physician, no longer buried in routine diagnostic work, can spend the appointment focused entirely on you—your concerns, your questions, your individual circumstances and preferences.”
This is the future I want, too! And I imagine it’s the one that would be built if healthcare providers were in charge. What worries me is that increasingly, non-medical entities and middle men are involved in care and very interested in deploying AI primarily to reduce labor costs and boost profit margins. In vetmed, where this is way less regulation than human medicine, companies are pushing AI systems for radiology and pathology with little validation data and large open questions about accuracy. It’s important for us to both highlight ways the technology is useful and also not be Pollyana optimists who are blind to the real risks
100% agree - tech/AI alone isn't going to cut it. We need healthcare providers to take the lead, specifically providers who understand the complexities of human health and the importance of trust and human partnerships in relaying health information.
I love this column and I completely agree that if AI can free up doctors to spend more time seeing the person behind the diagnosis then it's a win for everyone. There is a lot of information that can only be exchanged in person so I can only hope that computers will never replace actual human connection.
Great article but when the average time a doc spends with a patient is about 7 minutes based on what I've read, how can this possibly happen - "what patients actually need most from healthcare: trust, understanding, and the kind of human connection that makes healing possible."
Currently I think it takes on the order of 8 years and a lot of money to become a GP while most parts of the world need more of them. AI as it develops should help reduce that time and cost. It may even allow GP's to have access to information that keeps patients off wait lists for specialists that are in even higher demand.
At the individual level it may help people determine who really needs a doctor and who just needs a little help.
I also see some potential for AI to cause great harm in society but this is one of the places it has great potential to help.
I envy your patients. I have no relationship with my doctors. They rush me in and out, let alone listen or provide the kind of human care you are describing. I actually think I am MORE likely to get that from a chatbot.
I hear you. The state of our healthcare is pretty awful. It's not doctors' fault .. it's the system that forces medical care to be transactional, and not relationship-based.
‘But here's what those headlines miss: medicine isn't just about getting the right diagnosis. It's about getting the right diagnosis for the right person at the right time’.
You seem to be implying that the AI algorithms may have omitted variable issues, namely the individual patient.
If that is incorrect then “I’ll just keep dancing” but not break out the booze.
I have mast cell activation syndrome. I have spent the majority of my 73 years with my multi-system symptoms and bizarre (but benign) growths. I understand that it was only recognized in 2016. MCAS is a complex disorder with difficult testing, and that virtually no physicians are trained that this syndrome even exists. I was lucky enough to be referred to the pre-eminent expert on MCAS. But despite the fact that I was lucky, I am on a FB group with hundreds of people who have- or believe they have MCAS. They are terrified. And from my own experience and theirs, there is little sympathy in our doctors’ offices for a complex disorder for which there is little reliable testing and no standard treatment. We have been labeled “depressed” or “hypochondriacal” and even “fired” from their practice. We have made frequent ER visits with anaphylaxis’s. I volunteer for teams of medical students, to teach them about MCAS and the experiences people with chronic, complex diseases have - and they confirm that none of their professors have spent more than 10 minutes on such topics. Doctors are obviously uncomfortable with their lack of knowledge but they are not focusing on the fears and limitations of our lives. Perhaps if AI had been able to determine an initial diagnosis, patients AND physicians could relax enough to listen and offer that extra care you describe. I hope AI can help.
It’s so sad how commonly people’s symptoms get dismissed my doctors. It’s the system. It doesn’t allow doctors and patients the time they need to listen and understand and to be understood. I’m hoping technology can help but it’s going to take a lot more than hope alone! Thanks for sharing this with me.
I love your newsletters. Read everyone and share so many. I happen to be looking for a new doctor, but you’re not even close to my community. My point is… How is it that you have the time to sit with people to really clue in on what’s going on, and to connect, as well as all the diagnosing and treating? What’s the key that I’m asking for when I interview new physicians? TIA
HI Judy - Thanks for the kind words and for sharing my writings! In order to have the time I need with patients, I have built my own practice and have a smaller patient panel than most doctors - with a direct primary care or "DPC" model to ensure my patients' needs get met. My hope is that someday, perhaps with the help of technology, everyone in this country has access to a doctor who knows their name, not just their diagnoses. :)
Thank you, thank you for today’s post about finding a physician! 😃
Thank you so much for responding. It sounds like you have what we call here … concierge doctors. Is that the same model? Maybe I need to check into that more. My understanding of this model is that it is not covered by insurance and I already see a lot of private pay, holistic type practitioners.
Shame is a biggie. I have a now ex-doctor who I thought was very good, but the prevailing emotion I felt in our appointments was disapproval. She lived rent free in my head for a few years. I felt like whatever I did was never good enough. I complained to friends, most of whom suggested I find another doctor. When she changed to a concierge type practice, I took the opportunity to opt out. No regrets.
Amen!
Dear Dr. McBride,
I've been fortunate. I celebrated my 80th birthday at the end of January in good health, so I haven't had the deep personal experience with the medical system that many people have had. I work to maintain that with lifestyle: diet, exercise, low stress, etc. My observations are from other people as well as what I have read.
What I have observed is that doctors seem to on a treadmill, and that there is a crucial shortage of them. I think there is a deep dysfunction in the medical system and that this has been deliberately caused by those who value lucrative financial return over concern for human well-being or basic human decency. The principle culprits include the pharmaceutical industry and their FDA regulators (captured via the revolving door, which should be eliminated) which through their influence on medical education maintain a palliative system that maximizes their customer base rather than a functional system where "health maintenance" means what the words imply; organized medicine that severely limits the supply of medical school graduates to keep medical salaries high; insurance companies that use their political influence to maintain in the U.S. a decrepit system based on private medical insurance and avoid adoption of a universal health system (resulting in the most expensive health system in the world, but a current ranking in health statistics that puts us in (I recall) about 46th place among nations); a "big food" system including agriculture, food processing, and its captured Agricultural Dept., that maintains the "Standard American Diet" (with its appropriate acronym, SAD), particularly maintaining a level of sugar consumption that is chronically toxic.
Fortunately, a great constellation of technological disruption appear to be in process to change this dismal situation. A non-profit thinktank called RethinkX has produced studies of several categories of disruption, the most relevant to medicine being Food and Labor. The disruptive food technologies are Precision Fermentation and Cellular Agriculture. These should deal with the Food component of our current problem. Labor involves advances in AI combined with Robotics, which will address issues related to the medical system. AI advances are explosive, moving rapidly toward Artificial General Intelligence (AGI) and then Artificial Super Intelligence (ASI). I believe the limitations of AI you imply will be temporary. One of the most important areas of development will be the "Omic" of metabolism. Metalomics with involve the comprehensive modelling of metabolic processes--first at the cellular level, but advancing to mastery of metabolism of the human body as a functional whole. This will involve individual variations based an DNA. (In time, when its accuracy has been verified, the long Stage-3 FDA trials for safety and efficacy will become unnecessary.)
Various researchers of the human aging process foresee a coming Longevity Escape Velocity when applications will advance life expectancy by more than a year per year, so that time will be "running in" instead of running out. Some forecasts are for LEV by early in the coming decade. I'm looking forward to it.
Thank you for this!!! I think you are spot on in naming the layered, complex problems that keep patients from getting the care they need and doctors from dispensing it. I hope you are right that AI, if use well and integrated with the very human experience of being alive, will help people get the care (and sense of agency) they need.
I really like this approach about AI!! Here in Brazil people don't have much knowledge about how AI can be used in favor and not as a competitor.
It's rewarding to see healthcare professionals becoming more and more human.
“Imagine visiting your doctor knowing that AI has already reviewed your lab results, analyzed your symptoms against vast databases of medical knowledge, and flagged potential concerns that deserve human attention. Your physician, no longer buried in routine diagnostic work, can spend the appointment focused entirely on you—your concerns, your questions, your individual circumstances and preferences.”
This is the future I want, too! And I imagine it’s the one that would be built if healthcare providers were in charge. What worries me is that increasingly, non-medical entities and middle men are involved in care and very interested in deploying AI primarily to reduce labor costs and boost profit margins. In vetmed, where this is way less regulation than human medicine, companies are pushing AI systems for radiology and pathology with little validation data and large open questions about accuracy. It’s important for us to both highlight ways the technology is useful and also not be Pollyana optimists who are blind to the real risks
100% agree - tech/AI alone isn't going to cut it. We need healthcare providers to take the lead, specifically providers who understand the complexities of human health and the importance of trust and human partnerships in relaying health information.
I love this column and I completely agree that if AI can free up doctors to spend more time seeing the person behind the diagnosis then it's a win for everyone. There is a lot of information that can only be exchanged in person so I can only hope that computers will never replace actual human connection.
Same!
Great article but when the average time a doc spends with a patient is about 7 minutes based on what I've read, how can this possibly happen - "what patients actually need most from healthcare: trust, understanding, and the kind of human connection that makes healing possible."
Only when our healthcare system is reinvented. Or if you are lucky enough to afford a doctor who has a smaller panel of patients and takes the time.
Well said, Lucy. Thanks for writing this. ❤️
Every newsletter of yours, Dr. McBride, is interesting and makes me think. Thank you!
Thanks!
Currently I think it takes on the order of 8 years and a lot of money to become a GP while most parts of the world need more of them. AI as it develops should help reduce that time and cost. It may even allow GP's to have access to information that keeps patients off wait lists for specialists that are in even higher demand.
At the individual level it may help people determine who really needs a doctor and who just needs a little help.
I also see some potential for AI to cause great harm in society but this is one of the places it has great potential to help.
Thanks for your newsletters…such a voice of reason!
awwww thanks, Nancy!
I envy your patients. I have no relationship with my doctors. They rush me in and out, let alone listen or provide the kind of human care you are describing. I actually think I am MORE likely to get that from a chatbot.
I hear you. The state of our healthcare is pretty awful. It's not doctors' fault .. it's the system that forces medical care to be transactional, and not relationship-based.
https://open.substack.com/pub/drfredpower/p/substack-article-1-the-common-cold?r=642fua&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true
‘But here's what those headlines miss: medicine isn't just about getting the right diagnosis. It's about getting the right diagnosis for the right person at the right time’.
You seem to be implying that the AI algorithms may have omitted variable issues, namely the individual patient.
If that is incorrect then “I’ll just keep dancing” but not break out the booze.