The Unfortunate Demise of the Case Study in Medicine

[Guest guest]

I was idly reading the Huffington Post on my iPad while

waiting for my wife and our pal to come back from a shopping expedition and

came across an interesting piece on AutoImmune Disease at http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html

This is the bit that caught my eye:

<snip> Historically medical discoveries originated

from physicians' keen observation of their patients' diseases and responses to

treatment. Doctors reported their findings to their colleagues or published

them as case studies. Today these " case studies " are often dismissed

as " anecdotes " and have become increasingly irrelevant. Instead, we

now focus on randomized controlled trials as the only standard of

" evidence " . Sadly, this dismisses the experience of thousands of

patients and physicians as they apply new scientific findings to treat

difficult conditions.

Basic scientific discoveries often take decades to be translated

into medical practice. Unfortunately, this prevents millions from accessing

therapies that could benefit from them now. The determining factor in deciding

whether to try a new approach with a patient is the risk/benefit equation. Is

the treatment more likely to help than harm? How risky is the treatment? What

are the side effects? How dangerous or risky is the current approach to a

problem? How debilitating or life threatening is the disease being treated?

These questions can guide exploration toward innovative approaches to chronic

disease. <snip>

This resonated particularly because I have been trying to

tidy up my chaotic electronic filing system and came across a piece from 2002

Entitled Why Don’t doctors listen? at http://www.cancerlynx.com/doctors_listen.html

and this is along similar lines:

<snip> ….. listening was considered essential,

an integral part of the art of medicine. Now insurance companies have decreed

that listening to the patient is a waste of time and will not pay for it.

While the physician's traditional role was to balance the

science of medicine and the art, somehow the balance became instead a

competition, a question of which was more important. Science won. Science is

our new religion, the savior that will rescue us from all human problems. This

situation was not imposed on physicians: we did it to ourselves. When the

managed care industry set out to eliminate waste from the delivery of health

care, it asked doctors to define quality medical care. We answered, and

continue to answer, in the language of science only. Good quality medical care,

we say, is:

Making a correct diagnosis with the least effort

Providing the latest treatment, one best treatment for each disease, as defined

by scientific studies in prestigious medical journals.

All else is wasted time. <snip>

These views seem to be borne out by the recent MiniPoll I

ran on the question Did You Get What You Wanted/Needed? See http://www.yananow.net/MiniPoll3.htm

I am only raising this point because from time to time there

is criticism of so called anecdotal evidence being used in the decision making

process, yet all of us, as we go about our lives make decisions on this basis

time and again. We ask people for their advice, what they did, how it worked

for them when we buy cars, TVs, DVD players. And, I think we tend to continue to

do this even with decisions about much more serious issues like prostate cancer.

How much emphasis we place on the views of other, non-professional people will

depend on our personal views of life.

There was a deal of criticism when I started to collect “anecdotes”

from men who had been diagnosed with prostate cancer and had made their

various decisions. I thought these were pertinent in most people’s

decision making process. One man in particular who labeled himself as a ‘scientist’

and those who challenged the absolute truth of science as ‘artists’

was particularly vociferous in his opposition. He claimed that making these

anecdotes was extremely dangerous despite the warnings I incorporated. I still

do not believe that there is any inherent danger in men reading the experiences

of other men and I believe it would be very helpful if doctors also paid a bit

more attention to the reality of what happens, and not merely to scientific

studies. In a recent exchange, Off-List, with a man around one of my postings,

which challenged some basic ‘scientific views’ I was able to point

to the anecdotal evidence in a number of stories which demonstrated that his ‘scientific

truth’ was not universal.

Just some thoughts knocked together on my iPad J while I

wait like Patience upon a monument – if I were home I’d be trying

to catch up on the mountain

of Updates.

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going

strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

[Guest guest]

Wow, iPads ARE really worth it. Well said.

Subject: The Unfortunate Demise of the Case Study in MedicineTo: ProstateCancerSupport , ww@..., newdx@...Date: Friday, October 15, 2010, 12:24 AM

I was idly reading the Huffington Post on my iPad while waiting for my wife and our pal to come back from a shopping expedition and came across an interesting piece on AutoImmune Disease at http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html This is the bit that caught my eye:

<snip> Historically medical discoveries originated from physicians' keen observation of their patients' diseases and responses to treatment. Doctors reported their findings to their colleagues or published them as case studies. Today these "case studies" are often dismissed as "anecdotes" and have become increasingly irrelevant. Instead, we now focus on randomized controlled trials as the only standard of "evidence". Sadly, this dismisses the experience of thousands of patients and physicians as they apply new scientific findings to treat difficult conditions.

Basic scientific discoveries often take decades to be translated into medical practice. Unfortunately, this prevents millions from accessing therapies that could benefit from them now. The determining factor in deciding whether to try a new approach with a patient is the risk/benefit equation. Is the treatment more likely to help than harm? How risky is the treatment? What are the side effects? How dangerous or risky is the current approach to a problem? How debilitating or life threatening is the disease being treated? These questions can guide exploration toward innovative approaches to chronic disease. <snip>

This resonated particularly because I have been trying to tidy up my chaotic electronic filing system and came across a piece from 2002 Entitled Why Don’t doctors listen? at http://www.cancerlynx.com/doctors_listen.html and this is along similar lines:

<snip> ….. listening was considered essential, an integral part of the art of medicine. Now insurance companies have decreed that listening to the patient is a waste of time and will not pay for it.

While the physician's traditional role was to balance the science of medicine and the art, somehow the balance became instead a competition, a question of which was more important. Science won. Science is our new religion, the savior that will rescue us from all human problems. This situation was not imposed on physicians: we did it to ourselves. When the managed care industry set out to eliminate waste from the delivery of health care, it asked doctors to define quality medical care. We answered, and continue to answer, in the language of science only. Good quality medical care, we say, is:

Making a correct diagnosis with the least effort

Providing the latest treatment, one best treatment for each disease, as defined by scientific studies in prestigious medical journals.

All else is wasted time. <snip>

These views seem to be borne out by the recent MiniPoll I ran on the question Did You Get What You Wanted/Needed? See http://www.yananow.net/MiniPoll3.htm

I am only raising this point because from time to time there is criticism of so called anecdotal evidence being used in the decision making process, yet all of us, as we go about our lives make decisions on this basis time and again. We ask people for their advice, what they did, how it worked for them when we buy cars, TVs, DVD players. And, I think we tend to continue to do this even with decisions about much more serious issues like prostate cancer. How much emphasis we place on the views of other, non-professional people will depend on our personal views of life.

There was a deal of criticism when I started to collect “anecdotes†from men who had been diagnosed with prostate cancer and had made their various decisions. I thought these were pertinent in most people’s decision making process. One man in particular who labeled himself as a ‘scientist’ and those who challenged the absolute truth of science as ‘artists’ was particularly vociferous in his opposition. He claimed that making these anecdotes was extremely dangerous despite the warnings I incorporated. I still do not believe that there is any inherent danger in men reading the experiences of other men and I believe it would be very helpful if doctors also paid a bit more attention to the reality of what happens, and not merely to scientific studies. In a recent exchange, Off-List, with a man around one of my postings, which

challenged some basic ‘scientific views’ I was able to point to the anecdotal evidence in a number of stories which demonstrated that his ‘scientific truth’ was not universal.

Just some thoughts knocked together on my iPad J while I wait like Patience upon a monument – if I were home I’d be trying to catch up on the mountain of Updates .

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

[Guest guest]

Terry,

your anecdotes are invaluable if only because they give those of us with prostate cancer an idea of the full range of possible outcomes from the various treatment options, something no doctor can do. This helps us make informed decisions when we choose our treatment course. Doctors tend to understate the possible side effects of the various treatments, though not intentionally. They tend to be optimists. I suspect if some scientist did a rigorous statistical analysis of the anecdotes he or she might find some surprising information about prostate cancer and its treatment.

Mike C.

Subject: The Unfortunate Demise of the Case Study in MedicineTo: ProstateCancerSupport , ww@..., newdx@...Date: Friday, October 15, 2010, 12:24 AM

I was idly reading the Huffington Post on my iPad while waiting for my wife and our pal to come back from a shopping expedition and came across an interesting piece on AutoImmune Disease at http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html This is the bit that caught my eye:

<snip> Historically medical discoveries originated from physicians' keen observation of their patients' diseases and responses to treatment. Doctors reported their findings to their colleagues or published them as case studies. Today these "case studies" are often dismissed as "anecdotes" and have become increasingly irrelevant. Instead, we now focus on randomized controlled trials as the only standard of "evidence". Sadly, this dismisses the experience of thousands of patients and physicians as they apply new scientific findings to treat difficult conditions.

Basic scientific discoveries often take decades to be translated into medical practice. Unfortunately, this prevents millions from accessing therapies that could benefit from them now. The determining factor in deciding whether to try a new approach with a patient is the risk/benefit equation. Is the treatment more likely to help than harm? How risky is the treatment? What are the side effects? How dangerous or risky is the current approach to a problem? How debilitating or life threatening is the disease being treated? These questions can guide exploration toward innovative approaches to chronic disease. <snip>

This resonated particularly because I have been trying to tidy up my chaotic electronic filing system and came across a piece from 2002 Entitled Why Don’t doctors listen? at http://www.cancerlynx.com/doctors_listen.html and this is along similar lines:

<snip> ….. listening was considered essential, an integral part of the art of medicine. Now insurance companies have decreed that listening to the patient is a waste of time and will not pay for it.

While the physician's traditional role was to balance the science of medicine and the art, somehow the balance became instead a competition, a question of which was more important. Science won. Science is our new religion, the savior that will rescue us from all human problems. This situation was not imposed on physicians: we did it to ourselves. When the managed care industry set out to eliminate waste from the delivery of health care, it asked doctors to define quality medical care. We answered, and continue to answer, in the language of science only. Good quality medical care, we say, is:

Making a correct diagnosis with the least effort

Providing the latest treatment, one best treatment for each disease, as defined by scientific studies in prestigious medical journals.

All else is wasted time. <snip>

These views seem to be borne out by the recent MiniPoll I ran on the question Did You Get What You Wanted/Needed? See http://www.yananow.net/MiniPoll3.htm

I am only raising this point because from time to time there is criticism of so called anecdotal evidence being used in the decision making process, yet all of us, as we go about our lives make decisions on this basis time and again. We ask people for their advice, what they did, how it worked for them when we buy cars, TVs, DVD players. And, I think we tend to continue to do this even with decisions about much more serious issues like prostate cancer. How much emphasis we place on the views of other, non-professional people will depend on our personal views of life.

There was a deal of criticism when I started to collect “anecdotes†from men who had been diagnosed with prostate cancer and had made their various decisions. I thought these were pertinent in most people’s decision making process. One man in particular who labeled himself as a ‘scientist’ and those who challenged the absolute truth of science as ‘artists’ was particularly vociferous in his opposition. He claimed that making these anecdotes was extremely dangerous despite the warnings I incorporated. I still do not believe that there is any inherent danger in men reading the experiences of other men and I believe it would be very helpful if doctors also paid a bit more attention to the reality of what happens, and not merely to scientific studies. In a recent exchange, Off-List, with a man around one of my postings, which

challenged some basic ‘scientific views’ I was able to point to the anecdotal evidence in a number of stories which demonstrated that his ‘scientific truth’ was not universal.

Just some thoughts knocked together on my iPad J while I wait like Patience upon a monument – if I were home I’d be trying to catch up on the mountain of Updates .

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

[Guest guest]

Terry, I agree with many of the things you

said in your post but I think one additional item was not addressed. It

is true that much of the managed care “encourage” more cost

effective diagnosis and treatments but I think what is more defining is the

constant threat of malpractice. The doctors know that if they choose the “accepted”

treatment options they will be less liable if things don’t go well.

I have also found doctors that will make decisions based on their experience

but some time you have to push them to get the real answers. My own

treatment plan was based on a “there are no studies that prove this but

it is based on my experience of 40 years in urology”. I also did my

own follow up with other knowledgeable sources before choosing my destination.

One more point is there are reasons why it

takes so long for is because it takes a long time and a lot of data before our government

is willing to approve it as safe for the population. It is one of the

things we have to live with if we want the protection from the snake oil

companies. During my journey with this disease I have learned to live with

trade off and having to balance life with trade offs. Right now I need to

be making up my mind on how long to continue along with my current treatment

options. The studies show I will be better off staying on ADT another

year or two, the doctor is also concern that the longer I stay on ADT the

greater the chance of having to live with permanent side effects. Where

do you draw the line. This reinforces my opinion where a patients best

option is to educate himself.

PS I am impressed with you being able to

type such a long email on the iPad. I have been eye balling them ever

since they came out.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert

Sent: Friday, October 15, 2010

12:25 AM

To: ProstateCancerSupport ;

ww@...; newdx@...

Subject:

The Unfortunate Demise of the Case Study in Medicine

I was idly

reading the Huffington Post on my iPad while waiting for my wife and our pal to

come back from a shopping expedition and came across an interesting piece on

AutoImmune Disease at http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html

This is the bit that caught my eye:

<snip>

Historically medical discoveries originated from physicians' keen observation

of their patients' diseases and responses to treatment. Doctors reported their

findings to their colleagues or published them as case studies. Today these

" case studies " are often dismissed as " anecdotes " and have

become increasingly irrelevant. Instead, we now focus on randomized controlled

trials as the only standard of " evidence " . Sadly, this dismisses the

experience of thousands of patients and physicians as they apply new scientific

findings to treat difficult conditions.

Basic

scientific discoveries often take decades to be translated into medical

practice. Unfortunately, this prevents millions from accessing therapies that

could benefit from them now. The determining factor in deciding whether to try

a new approach with a patient is the risk/benefit equation. Is the treatment

more likely to help than harm? How risky is the treatment? What are the side

effects? How dangerous or risky is the current approach to a problem? How

debilitating or life threatening is the disease being treated? These questions

can guide exploration toward innovative approaches to chronic disease.

<snip>

This

resonated particularly because I have been trying to tidy up my chaotic

electronic filing system and came across a piece from 2002 Entitled Why

Don’t doctors listen? at http://www.cancerlynx.com/doctors_listen.html

and this is along similar lines:

<snip>

….. listening was considered essential, an integral part of the art of

medicine. Now insurance companies have decreed that listening to the patient is

a waste of time and will not pay for it.

While the

physician's traditional role was to balance the science of medicine and the

art, somehow the balance became instead a competition, a question of which was

more important. Science won. Science is our new religion, the savior that will

rescue us from all human problems. This situation was not imposed on

physicians: we did it to ourselves. When the managed care industry set out to

eliminate waste from the delivery of health care, it asked doctors to define

quality medical care. We answered, and continue to answer, in the language of

science only. Good quality medical care, we say, is:

Making a

correct diagnosis with the least effort

Providing the latest treatment, one best treatment for each disease, as defined

by scientific studies in prestigious medical journals.

All else is

wasted time. <snip>

These views

seem to be borne out by the recent MiniPoll I ran on the question

Did You Get What You Wanted/Needed?

See http://www.yananow.net/MiniPoll3.htm

I am only

raising this point because from time to time there is criticism of so called

anecdotal evidence being used in the decision making process, yet all of us, as

we go about our lives make decisions on this basis time and again. We ask people

for their advice, what they did, how it worked for them when we buy cars, TVs,

DVD players. And, I think we tend to continue to do this even with decisions

about much more serious issues like prostate cancer. How much emphasis we place

on the views of other, non-professional people will depend on our personal

views of life.

There was a

deal of criticism when I started to collect “anecdotes” from

men who had been diagnosed with prostate cancer and had made their various

decisions. I thought these were pertinent in most people’s decision

making process. One man in particular who labeled himself as a

‘scientist’ and those who challenged the absolute truth of science

as ‘artists’ was particularly vociferous in his opposition. He

claimed that making these anecdotes was extremely dangerous despite the

warnings I incorporated. I still do not believe that there is any inherent

danger in men reading the experiences of other men and I believe it would be

very helpful if doctors also paid a bit more attention to the reality of what

happens, and not merely to scientific studies. In a recent exchange, Off-List,

with a man around one of my postings, which challenged some basic

‘scientific views’ I was able to point to the anecdotal evidence in

a number of stories which demonstrated that his ‘scientific truth’

was not universal.

Just some

thoughts knocked together on my iPad J while I wait

like Patience upon a monument – if I were home I’d be trying to

catch up on the mountain

of Updates.

All

the best

Prostate

men need enlightening, not frightening

Terry

Herbert - diagnosed in 1996 and still going strong

Read

A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

[Guest guest]

Terry, I agree with many of the things you

said in your post but I think one additional item was not addressed. It

is true that much of the managed care “encourage” more cost

effective diagnosis and treatments but I think what is more defining is the

constant threat of malpractice. The doctors know that if they choose the “accepted”

treatment options they will be less liable if things don’t go well.

I have also found doctors that will make decisions based on their experience

but some time you have to push them to get the real answers. My own

treatment plan was based on a “there are no studies that prove this but

it is based on my experience of 40 years in urology”. I also did my

own follow up with other knowledgeable sources before choosing my destination.

One more point is there are reasons why it

takes so long for is because it takes a long time and a lot of data before our government

is willing to approve it as safe for the population. It is one of the

things we have to live with if we want the protection from the snake oil

companies. During my journey with this disease I have learned to live with

trade off and having to balance life with trade offs. Right now I need to

be making up my mind on how long to continue along with my current treatment

options. The studies show I will be better off staying on ADT another

year or two, the doctor is also concern that the longer I stay on ADT the

greater the chance of having to live with permanent side effects. Where

do you draw the line. This reinforces my opinion where a patients best

option is to educate himself.

PS I am impressed with you being able to

type such a long email on the iPad. I have been eye balling them ever

since they came out.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert

Sent: Friday, October 15, 2010

12:25 AM

To: ProstateCancerSupport ;

ww@...; newdx@...

Subject:

The Unfortunate Demise of the Case Study in Medicine

I was idly

reading the Huffington Post on my iPad while waiting for my wife and our pal to

come back from a shopping expedition and came across an interesting piece on

AutoImmune Disease at http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html

This is the bit that caught my eye:

<snip>

Historically medical discoveries originated from physicians' keen observation

of their patients' diseases and responses to treatment. Doctors reported their

findings to their colleagues or published them as case studies. Today these

" case studies " are often dismissed as " anecdotes " and have

become increasingly irrelevant. Instead, we now focus on randomized controlled

trials as the only standard of " evidence " . Sadly, this dismisses the

experience of thousands of patients and physicians as they apply new scientific

findings to treat difficult conditions.

Basic

scientific discoveries often take decades to be translated into medical

practice. Unfortunately, this prevents millions from accessing therapies that

could benefit from them now. The determining factor in deciding whether to try

a new approach with a patient is the risk/benefit equation. Is the treatment

more likely to help than harm? How risky is the treatment? What are the side

effects? How dangerous or risky is the current approach to a problem? How

debilitating or life threatening is the disease being treated? These questions

can guide exploration toward innovative approaches to chronic disease.

<snip>

This

resonated particularly because I have been trying to tidy up my chaotic

electronic filing system and came across a piece from 2002 Entitled Why

Don’t doctors listen? at http://www.cancerlynx.com/doctors_listen.html

and this is along similar lines:

<snip>

….. listening was considered essential, an integral part of the art of

medicine. Now insurance companies have decreed that listening to the patient is

a waste of time and will not pay for it.

While the

physician's traditional role was to balance the science of medicine and the

art, somehow the balance became instead a competition, a question of which was

more important. Science won. Science is our new religion, the savior that will

rescue us from all human problems. This situation was not imposed on

physicians: we did it to ourselves. When the managed care industry set out to

eliminate waste from the delivery of health care, it asked doctors to define

quality medical care. We answered, and continue to answer, in the language of

science only. Good quality medical care, we say, is:

Making a

correct diagnosis with the least effort

Providing the latest treatment, one best treatment for each disease, as defined

by scientific studies in prestigious medical journals.

All else is

wasted time. <snip>

These views

seem to be borne out by the recent MiniPoll I ran on the question

Did You Get What You Wanted/Needed?

See http://www.yananow.net/MiniPoll3.htm

I am only

raising this point because from time to time there is criticism of so called

anecdotal evidence being used in the decision making process, yet all of us, as

we go about our lives make decisions on this basis time and again. We ask people

for their advice, what they did, how it worked for them when we buy cars, TVs,

DVD players. And, I think we tend to continue to do this even with decisions

about much more serious issues like prostate cancer. How much emphasis we place

on the views of other, non-professional people will depend on our personal

views of life.

There was a

deal of criticism when I started to collect “anecdotes” from

men who had been diagnosed with prostate cancer and had made their various

decisions. I thought these were pertinent in most people’s decision

making process. One man in particular who labeled himself as a

‘scientist’ and those who challenged the absolute truth of science

as ‘artists’ was particularly vociferous in his opposition. He

claimed that making these anecdotes was extremely dangerous despite the

warnings I incorporated. I still do not believe that there is any inherent

danger in men reading the experiences of other men and I believe it would be

very helpful if doctors also paid a bit more attention to the reality of what

happens, and not merely to scientific studies. In a recent exchange, Off-List,

with a man around one of my postings, which challenged some basic

‘scientific views’ I was able to point to the anecdotal evidence in

a number of stories which demonstrated that his ‘scientific truth’

was not universal.

Just some

thoughts knocked together on my iPad J while I wait

like Patience upon a monument – if I were home I’d be trying to

catch up on the mountain

of Updates.

All

the best

Prostate

men need enlightening, not frightening

Terry

Herbert - diagnosed in 1996 and still going strong

Read

A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html