This is on related, but I believe most people here might benefit:
Apply for over $3M Grant for Researchers, 54+ Funded MSc/Phd & Postdoc Opportunities in USA, France & Australia
Research Grant on Advancing Therapies Towards Curing Oncogenic-Driven Lung Cancer. ($2.5million| MMRF Scholars Research grant ($400,000| FARA's Research Grant ($275,000|
Roundup and analysis of the top headlines on health security, pandemic preparedness, COVID-19, and other news from the Johns Hopkins Center for
January 11, 2024
Roundup and analysis of the top headlines on health security, pandemic preparedness, COVID-19, and other news from the Johns Hopkins Center for Health Security
January 11, 2024
📍TOP NEWS
Nearly 10,000 COVID deaths last month; US records more than 1,600 COVID deaths first week of December; US FDA leaders call for stronger vaccination efforts
📍Holiday gatherings and the circulation of a new SARS-CoV-2 variant—the WHO variant of interest JN.1—led to an increased number of COVID-19 cases globally last month, WHO officials said this week. Nearly 10,000 COVID-19-related deaths were reported in December and hospital admissions grew by more than 40% in the almost 50 countries that continue to share pandemic trend information, mostly in Europe and the Americas.
This response is excellent both with regard to dealing with patients, but also the worked example is very informative. I cannot access the risk calculator that is linked, however. Can the author please check and clarify the web link?
Unfortunately, the company hosting our calculator website has apparently had some major outages the last 24 hours - somewhere in Denver is the problem - hopefully it will be back up soon.
What a fantastic article, but does it stand up to real world scenarios? Do consumers value the concept but not the reality of personal responsibility for health choices? Consumers in Australia couldn't get enough of 'keeping us safe' during covid but that mentality shows no signs of abating
Very nice article, thank you. In my field of surgery, i strive for this approach, and explain the risks and benefits of medical therapy alone, surgical therapy, and other forms of therapy. These involve risk over the next 2-3 yrs of “events” based on the available (usually low quality) evidence. I try to understand the patients values to help them decide if surgery is right for them. After 10 yrs, i would say my experience is that about 50% of people leave the office with (in my opinion) a shared decision. 25% come back for another discussion. Many are quite confused! The rest give me statements like “so do i need surgery?”, or something like that which leads me to believe they have no idea what i was talking about! But I am a work in progress...
Thanks for the kind words - I think your percentages are close to what most will see when they do a shared decision approach - but for the 50% that leave with a shared decision I think that is really important. There isn't a lot in medicine where 50% of the people get a benefit from what we do.
Numeracy is poor across populations - why not avoid specific numbers and describe the best, worst, and most likely case scenarios, with and without the intervention? If the patient asks for numbers, you've got them in your back pocket. You could then make a recommendation based on the patient's values and goals. Yes, there should be some convincing, if you suspect the patient is making a decision clearly contrary to their goals: "Help me understand. You say you value x, and this will help you pursue that. What are your concerns?"
Hi Joshua - thanks for the comment - I'm convinced there is no way to do shared decision-making with out using ballpark numbers - if for no other reason the numbers frame the concept of the risk associated with the surrogate numbers because people typically come in with a belief about risk that is disproportionately high. And also I think everybody should know that when they hear something reduces a risk by anything greater than ~10% it is almost for sure a relative number which is misleading without context.
The problem is, humans struggle to weigh numbers associated with incommensurate values. What does it mean to weigh x% chance of success (but with some downside) against y% risk of some burden against z% risk of a different burden. Furthermore, folks often end up transforming those numbers in their own minds into decision weights: this will happen, this won't happen, this probably will/won't happen.
Instead, you could tell a story, incorporating your knowledge of the evidence as well as your experience as a clinician, about what you think the best, worst, and most likely case scenarios would be with and without the intervention. Human minds are made for stories and much more easily compare and contrast them. You can do this after you discover what values are most important to this person (e.g., spending time with grandkids, vs avoiding healthcare interactions, vs living as long as possible no matter the trade-off).
This storytelling, of course, requires that the patient trust you: they need to trust that your account of things is accurate. Maybe they don't trust you, and they want the numbers so they can trust those instead. But they still need to trust that your account of the numbers is trustworthy (and you haven't fallen prey to believing relative number bias yourself).
Hi Joshua: I'm thinking there might be 2 different issues here - the examples on patientpreferences.org are all around conditions which are "symptomatic" dialysis, ICU, colectomy etc however when it comes to treating BP, lipids and glucose these are almost always taking asymptomatic people and lowering an estimated risk of getting a symptomatic thing. I can't think of how the patientpreferences.org approach would work for risk factors. Would love to hear how you think it would work for say a person with an "elevated" cholesterol where we might reduce the risk from 10% over 10 years down to 8% over 10 years and show this without using the type of tools I'm showing. The best case scenario is the 1 in 50 people like in the example will benefit but the other 49 won't.
Nice to see someone talking about a few of the things I mentioned in the original article and I'm not even a doctor or a professor. Things like lifestyle in particular and what the real risks and benefits may be to this particular patient. What about other meds they are taking and interactions?
THIS in particular "Our job as clinicians is to help patients make an informed decision."
This topic is the entire subject of Substack site Slow Aging and Delay Chronic Disease Management. What the patient needs to understand is how their health is threatened, what they can do about it, and why it is worth their time. No primary care doctor has the time to fill in those blanks adequately himself to allow for truly shared decision making. That is why I am such a fan of teams that include health coaches. Heart disease is the leading cause of death in the United States killing one in five of us. That does not count deaths from related conditions like stroke, diabetes, congestive heart failure, chronic kidney disease etc. Anyone who thinks a ten minute conversation can prepare a person for shared decision making is fooling themselves. Take the example of the person who has had a heart attack. If they receive optimal medical therapy vs the care that most people receive, they are ten times as likely to be alive in five years and their health care costs will be $20,000 a year less. Patients with diabetes on optimal medical therapy are one fourth as likely to have a heart attack, one fifth as likely to have a stroke, and one sixth as likely to go on dialysis. Optimal medical therapy for diabetes includes controlling the blood pressure, cholesterol, and sugar while not smoking and taking aspirin if high risk. We are not talking about some fractional improvement. We are talking about lowering risk serveral fold. How many patient do you think understand that. Most American clinicians are unaware of it.
Hi William - I think you have some legitimate points - you are correct this can't all be done in 10 minutes (multiple visits might be required). However, properly trained health coaches could do this if their agenda was to use the best available evidence and engage people in shared decision-making. In my experience the focus of these coaches is more about getting their numbers lower (blood pressure, glucose cholesterol). Interestingly, when I get the opportunity to chat with these people they are often (but not always) quite unaware of the absolute risks and benefits and the costs and inconvenience and once they know this information they often change their tune somewhat. I was wondering why you presented all your evidence as relative numbers - the evidence is overwhelming these numbers are misleading and need context. Just wondering if you think it is possible to communicate that their "health is threatened" or that it is "worth their time" without doing some of the things I have suggested. Thanks.
I appreciate your answer. I support informed shared decision making. It is a counterproductive idea if patients don't have the understanding required to make a good decision. Our entire healthcare system is very poorly designed to address chronic diseases. The old paradigm organized around risk factors and organ systems is an anachronism. Virtually all chronic diseases and the rate of aging are related. It is not genetic mutatiions that cause most chronic disease, it is gene regulation. And here is the really crazy part. Normal genes that are essential to fetal development, become less active in healthy young life, and then they are reactivated by things like abdominal fat and cigarette smoke to cause heart disease and cancer later. Diet, exercise, intermittent fasting, and the drugs included in the diagram reduce oxidant production and inflammation to prolong life by 8 years in patients with type 2 diabetes and chronic kidney disease. I am convinced the best medications provide most of their benefit by interfering directly with oxidant production and inflammation rather than lowering the target risk factor. The best interventions are protecting every organ and cell in the body. Check out the last paragraph of the last link. My goal is to support shared decision making that is a truly informed consent.
Appreciate the acknowledgment of the practical limitations to applying such a thorough approach to a decision on 1 med for 1 problem. Not feasible if one is trying to run any sort of practice. However, it is a useful model to keep in mind, and I will endeavour to try it on the few high impact scenarios I might encounter on any given day.
Also appreciate the phrasing that “the therapy failed” the patient, rather than the other way around. I’ve been trying to incorporate this mode of thinking since I came across it (on this substack iirc).
I’m an NNT person through and through, so it is a good reminder of the limits of our knowledge when, even for “settled” aspects like statin in secondary prevention, the vast majority of pts taking that med will be wasting their time, and we still have no way to identify those people.
Finally, as a nod to that last point, and my libertarian slant, I’ve never had issues with Dr. Cifu’s group C. I agree with the author here (if I understand it correctly) that our job is to provide the information in as-appropriate a fashion as is possible to allow a patient to be most informed in making their decision, but to be fairly indifferent to what that decision actually is.
Thanks for a wonderful article - I have thankfully developed the habit of asking ARR and also how diet and exercise play into things? I still love the modified Maimonides quote (maybe Osler said it?) - “Any health issue that can be managed by diet and exercise should be treated in no other way” and that is the top tier of any approach I have. I’m well over 90% compliant with exercise due to my lifestyle and hopefully around 50-60% compliant with diet. Like everything, I wax and wane but overall I tend to have better health when I don’t over care managing it.
Let's get at least a little bit real. The true goal of all doctoring and the health care profession should be to discover the causes and roots of disease and illness and then to eliminate those things. No medications, unending testing and surgeries should ever be done except perhaps in emergency situations.
To just put people on "forever" drugs is criminal for it does not eliminate or address the causes of disease. There are always causes for illnesses and diseases. They don't appear for no reason and modern medicine is so far behind the curve as to not engage in the discovery of causes and treatment of causes.
I want no part of your stone age medical community. That is why I am my own doctor as much as I can be. If I wanted to take endless drugs, I could find that info on the Internet and get drugs on the black market.
James, "To have the focus be on important cardiovascular (CV) outcomes and not on surrogate markers is a great start" seems easier to do than say a discussion of bad outcomes from Diabetes. Everyone focuses instead on A1c reduction! Any advice there?
"It is not our job to convince patients to do something but rather to convince them, where possible, that before a decision is made, they need to appreciate and understand the risks, benefits and harms of what is being proposed. "
How many doctors practice like that? IMO, VERY few
This is on related, but I believe most people here might benefit:
Apply for over $3M Grant for Researchers, 54+ Funded MSc/Phd & Postdoc Opportunities in USA, France & Australia
Research Grant on Advancing Therapies Towards Curing Oncogenic-Driven Lung Cancer. ($2.5million| MMRF Scholars Research grant ($400,000| FARA's Research Grant ($275,000|
https://gradinterface.substack.com/p/over-3m-grant-for-researchers-54
Roundup and analysis of the top headlines on health security, pandemic preparedness, COVID-19, and other news from the Johns Hopkins Center for
January 11, 2024
Roundup and analysis of the top headlines on health security, pandemic preparedness, COVID-19, and other news from the Johns Hopkins Center for Health Security
January 11, 2024
📍TOP NEWS
Nearly 10,000 COVID deaths last month; US records more than 1,600 COVID deaths first week of December; US FDA leaders call for stronger vaccination efforts
📍Holiday gatherings and the circulation of a new SARS-CoV-2 variant—the WHO variant of interest JN.1—led to an increased number of COVID-19 cases globally last month, WHO officials said this week. Nearly 10,000 COVID-19-related deaths were reported in December and hospital admissions grew by more than 40% in the almost 50 countries that continue to share pandemic trend information, mostly in Europe and the Americas.
January-11--2024.
https://myemail.constantcontact.com/Health-Security-Decoded---January-11--2024.html?soid=1107826135286&aid=WJ9gu7HEtY0
This response is excellent both with regard to dealing with patients, but also the worked example is very informative. I cannot access the risk calculator that is linked, however. Can the author please check and clarify the web link?
The Denver server is back up after 36+ hours so the site should now be working. Let me know what you think. Thanks.
Unfortunately, the company hosting our calculator website has apparently had some major outages the last 24 hours - somewhere in Denver is the problem - hopefully it will be back up soon.
The link is https://decisionaid.ca/cvd
What a fantastic article, but does it stand up to real world scenarios? Do consumers value the concept but not the reality of personal responsibility for health choices? Consumers in Australia couldn't get enough of 'keeping us safe' during covid but that mentality shows no signs of abating
Very nice article, thank you. In my field of surgery, i strive for this approach, and explain the risks and benefits of medical therapy alone, surgical therapy, and other forms of therapy. These involve risk over the next 2-3 yrs of “events” based on the available (usually low quality) evidence. I try to understand the patients values to help them decide if surgery is right for them. After 10 yrs, i would say my experience is that about 50% of people leave the office with (in my opinion) a shared decision. 25% come back for another discussion. Many are quite confused! The rest give me statements like “so do i need surgery?”, or something like that which leads me to believe they have no idea what i was talking about! But I am a work in progress...
Thanks for the kind words - I think your percentages are close to what most will see when they do a shared decision approach - but for the 50% that leave with a shared decision I think that is really important. There isn't a lot in medicine where 50% of the people get a benefit from what we do.
Numeracy is poor across populations - why not avoid specific numbers and describe the best, worst, and most likely case scenarios, with and without the intervention? If the patient asks for numbers, you've got them in your back pocket. You could then make a recommendation based on the patient's values and goals. Yes, there should be some convincing, if you suspect the patient is making a decision clearly contrary to their goals: "Help me understand. You say you value x, and this will help you pursue that. What are your concerns?"
Hi Joshua - thanks for the comment - I'm convinced there is no way to do shared decision-making with out using ballpark numbers - if for no other reason the numbers frame the concept of the risk associated with the surrogate numbers because people typically come in with a belief about risk that is disproportionately high. And also I think everybody should know that when they hear something reduces a risk by anything greater than ~10% it is almost for sure a relative number which is misleading without context.
I agree with you about the biasing effect of certain stats, particularly relative numbers and risks.
I appreciate the work done at the Patient Preferences Project around scenario planning: https://patientpreferences.org
The problem is, humans struggle to weigh numbers associated with incommensurate values. What does it mean to weigh x% chance of success (but with some downside) against y% risk of some burden against z% risk of a different burden. Furthermore, folks often end up transforming those numbers in their own minds into decision weights: this will happen, this won't happen, this probably will/won't happen.
Instead, you could tell a story, incorporating your knowledge of the evidence as well as your experience as a clinician, about what you think the best, worst, and most likely case scenarios would be with and without the intervention. Human minds are made for stories and much more easily compare and contrast them. You can do this after you discover what values are most important to this person (e.g., spending time with grandkids, vs avoiding healthcare interactions, vs living as long as possible no matter the trade-off).
This storytelling, of course, requires that the patient trust you: they need to trust that your account of things is accurate. Maybe they don't trust you, and they want the numbers so they can trust those instead. But they still need to trust that your account of the numbers is trustworthy (and you haven't fallen prey to believing relative number bias yourself).
Hi Joshua: I'm thinking there might be 2 different issues here - the examples on patientpreferences.org are all around conditions which are "symptomatic" dialysis, ICU, colectomy etc however when it comes to treating BP, lipids and glucose these are almost always taking asymptomatic people and lowering an estimated risk of getting a symptomatic thing. I can't think of how the patientpreferences.org approach would work for risk factors. Would love to hear how you think it would work for say a person with an "elevated" cholesterol where we might reduce the risk from 10% over 10 years down to 8% over 10 years and show this without using the type of tools I'm showing. The best case scenario is the 1 in 50 people like in the example will benefit but the other 49 won't.
Nice to see someone talking about a few of the things I mentioned in the original article and I'm not even a doctor or a professor. Things like lifestyle in particular and what the real risks and benefits may be to this particular patient. What about other meds they are taking and interactions?
THIS in particular "Our job as clinicians is to help patients make an informed decision."
Very interesting analysis of the way to speak to patients. I certainly can see the value of a different approach to things.
OK, Dr's I need thyroid info. Point me in the right direction to gather good info.
Have a 25-30 mm nodule, two FNA's "inconclusive", three ultrasounds show no expansion. Been watching it for two plus years. Dr said just take it out.
Have genetics been done on the FNA? Usually very helpful for “risk stratification.”
This topic is the entire subject of Substack site Slow Aging and Delay Chronic Disease Management. What the patient needs to understand is how their health is threatened, what they can do about it, and why it is worth their time. No primary care doctor has the time to fill in those blanks adequately himself to allow for truly shared decision making. That is why I am such a fan of teams that include health coaches. Heart disease is the leading cause of death in the United States killing one in five of us. That does not count deaths from related conditions like stroke, diabetes, congestive heart failure, chronic kidney disease etc. Anyone who thinks a ten minute conversation can prepare a person for shared decision making is fooling themselves. Take the example of the person who has had a heart attack. If they receive optimal medical therapy vs the care that most people receive, they are ten times as likely to be alive in five years and their health care costs will be $20,000 a year less. Patients with diabetes on optimal medical therapy are one fourth as likely to have a heart attack, one fifth as likely to have a stroke, and one sixth as likely to go on dialysis. Optimal medical therapy for diabetes includes controlling the blood pressure, cholesterol, and sugar while not smoking and taking aspirin if high risk. We are not talking about some fractional improvement. We are talking about lowering risk serveral fold. How many patient do you think understand that. Most American clinicians are unaware of it.
https://williamhbestermannjrmd.substack.com/p/proof-in-humans-that-inhibiting-mtor
https://pubmed.ncbi.nlm.nih.gov/21331203/
https://www.nejm.org/doi/full/10.1056/nejmoa0706245
https://williamhbestermannjrmd.substack.com/p/the-updated-case-for-optimal-medical
Hi William - I think you have some legitimate points - you are correct this can't all be done in 10 minutes (multiple visits might be required). However, properly trained health coaches could do this if their agenda was to use the best available evidence and engage people in shared decision-making. In my experience the focus of these coaches is more about getting their numbers lower (blood pressure, glucose cholesterol). Interestingly, when I get the opportunity to chat with these people they are often (but not always) quite unaware of the absolute risks and benefits and the costs and inconvenience and once they know this information they often change their tune somewhat. I was wondering why you presented all your evidence as relative numbers - the evidence is overwhelming these numbers are misleading and need context. Just wondering if you think it is possible to communicate that their "health is threatened" or that it is "worth their time" without doing some of the things I have suggested. Thanks.
I appreciate your answer. I support informed shared decision making. It is a counterproductive idea if patients don't have the understanding required to make a good decision. Our entire healthcare system is very poorly designed to address chronic diseases. The old paradigm organized around risk factors and organ systems is an anachronism. Virtually all chronic diseases and the rate of aging are related. It is not genetic mutatiions that cause most chronic disease, it is gene regulation. And here is the really crazy part. Normal genes that are essential to fetal development, become less active in healthy young life, and then they are reactivated by things like abdominal fat and cigarette smoke to cause heart disease and cancer later. Diet, exercise, intermittent fasting, and the drugs included in the diagram reduce oxidant production and inflammation to prolong life by 8 years in patients with type 2 diabetes and chronic kidney disease. I am convinced the best medications provide most of their benefit by interfering directly with oxidant production and inflammation rather than lowering the target risk factor. The best interventions are protecting every organ and cell in the body. Check out the last paragraph of the last link. My goal is to support shared decision making that is a truly informed consent.
https://williamhbestermannjrmd.substack.com/p/proof-in-humans-that-inhibiting-mtor
https://pubmed.ncbi.nlm.nih.gov/27531506/#:~:text=Conclusions%2Finterpretation%3A%20At%2021.2%20years,free%20from%20incident%20cardiovascular%20disease.
https://pubmed.ncbi.nlm.nih.gov/32079684/
Great stuff.
Appreciate the acknowledgment of the practical limitations to applying such a thorough approach to a decision on 1 med for 1 problem. Not feasible if one is trying to run any sort of practice. However, it is a useful model to keep in mind, and I will endeavour to try it on the few high impact scenarios I might encounter on any given day.
Also appreciate the phrasing that “the therapy failed” the patient, rather than the other way around. I’ve been trying to incorporate this mode of thinking since I came across it (on this substack iirc).
I’m an NNT person through and through, so it is a good reminder of the limits of our knowledge when, even for “settled” aspects like statin in secondary prevention, the vast majority of pts taking that med will be wasting their time, and we still have no way to identify those people.
Finally, as a nod to that last point, and my libertarian slant, I’ve never had issues with Dr. Cifu’s group C. I agree with the author here (if I understand it correctly) that our job is to provide the information in as-appropriate a fashion as is possible to allow a patient to be most informed in making their decision, but to be fairly indifferent to what that decision actually is.
Thanks for a wonderful article - I have thankfully developed the habit of asking ARR and also how diet and exercise play into things? I still love the modified Maimonides quote (maybe Osler said it?) - “Any health issue that can be managed by diet and exercise should be treated in no other way” and that is the top tier of any approach I have. I’m well over 90% compliant with exercise due to my lifestyle and hopefully around 50-60% compliant with diet. Like everything, I wax and wane but overall I tend to have better health when I don’t over care managing it.
Let's get at least a little bit real. The true goal of all doctoring and the health care profession should be to discover the causes and roots of disease and illness and then to eliminate those things. No medications, unending testing and surgeries should ever be done except perhaps in emergency situations.
To just put people on "forever" drugs is criminal for it does not eliminate or address the causes of disease. There are always causes for illnesses and diseases. They don't appear for no reason and modern medicine is so far behind the curve as to not engage in the discovery of causes and treatment of causes.
I want no part of your stone age medical community. That is why I am my own doctor as much as I can be. If I wanted to take endless drugs, I could find that info on the Internet and get drugs on the black market.
James, "To have the focus be on important cardiovascular (CV) outcomes and not on surrogate markers is a great start" seems easier to do than say a discussion of bad outcomes from Diabetes. Everyone focuses instead on A1c reduction! Any advice there?
Thanks - yes the entire concept is the same for diabetes - see our diabetes tool for all the numbers https://decisionaid.ca/diabetes/
WOW! I had not seen this!!!
James is a WISE MAN:
"It is not our job to convince patients to do something but rather to convince them, where possible, that before a decision is made, they need to appreciate and understand the risks, benefits and harms of what is being proposed. "
How many doctors practice like that? IMO, VERY few