Information Systems, Good Medicine and the Search for Black Swans

Many years ago, when I was in medical school, learning the art of the physical exam, I was taught that the exam should always be done in the same order each time, starting with the skin, moving to the head and then working your way down, leaving the rectal exam and the exam of the genitalia for last (more for the comfort and the dignity of the patient).  It was drilled into me that it must always be done from the right side of the bed or exam table.  That consistency and discipline in performing the physical exam the same way each time was considered a critical element of good medicine. 

While the idea of a physical exam in general may be seen quaint and outdated in our era of telemedicine, scans, apps that can monitor bodily functions and other imaging technology, the discipline of the physical exam and even the emotional impact of that exam is hardly outdated.  Abraham Verghese, the esteemed author, physician and educator has written and spoken about the importance of the physical exam in both a ted med talk and in the medical literature and his words are worth reviewing.  Verghese emphasizes the ritual part of the physical exam, and the importance it holds in bonding the physician and the patient.  He writes,

“…….the ritual of the bedside examination involves two people meeting in a special place (the hospital or clinic) wearing ritualized garments (patient gowns and white coats for the doctors) and with ritualized instruments, and most importantly, the patient undresses and allows the doctor to touch them.  Disrobing and touching in any other context would be assault, but not part of this ritual which dates back to antiquity.”

 

He goes on to say,

“We propose that if the ritual is short changed, if it is done in a cursory fashion, if it is not done with skill and consideration, if its sacredness seems to be violated, then the transformation (which in this case is the formation of the doctor-patient bond, the beginning of a therapeutic partnership and the healing process) does not take place.”

His words reflect the way a good physical exam helps form the basis for the doctor-patient relationship.  However that is not what I will choose to dwell on in this post.  Rather I want to discuss the ritual itself.  The very rote and disciplined way the examination is done each and every time a physician, especially an internist or family physician sees a patient. 

Back in medical school, I was taught to perform the exam very precisely each time for a simple reason.  I was told that if I did the exam the same way each time, it would make it more likely for me to notice anomalies.  I would notice something that was not like the thousands of other exams I had done.  In many ways, medicine is extremely repetitive.  Because of this repetitive nature of practice, it is very easy for physicians (and nurse practitioners) to go on auto pilot – to become reflexive in their actions instead of remaining cognitive with every patient and through every exam.  At the same time, high quality medicine is all about finding the needle in the haystack: noticing the unusual exam finding that might suggest an illness that could turn into tragedy.  In order to find that “black swan” (defined as an unpredictable or unforeseen event or diagnosis, typically with extreme consequences) one must sift through thousands of exams that are very usual and very common.  One must feel a lot of normal livers and listen to many normal hearts to find the one that is indicative of a disease.  It is so easy not to notice!  It is so easy to take shortcuts and not go through the discipline of the exam. 

The result can be a missed diagnosis and ironically a more expensive evaluation, as unfocused diagnostic evaluation often called shotgun medicine, requires numerous tests which are unnecessary if instead the exam is thorough.  An example is the 50 year old patient who comes in with chest pain.  On the basis of that history and a lax approach to the physical exam a cardiac evaluation would be done which could include stress tests, and even cardiac catheterization.   If one however does a physical exam and notes that the pain is in one dermatome (an area of the skin supplied by nerves from one spinal root) and that small vesicles can be seen, the diagnosis of shingles is made and no further evaluation is needed. 

I sat once on an airplane next to a psychologist.  He told me that he had been an airline pilot and had developed a psychological test to see if prospective pilots would be good in the cockpit. He left the pilot’s seat to develop this test as he felt his ability to improve airline safety would be greater in promoting widespread use of the test than in his flying planes.  The key to being a good pilot was to be highly intelligent but not too intellectual.  You had to do the same things every time you took off and landed.  On each take-off, you had to make a decision as to whether to abort the take off and it had to be a conscious decision.  You could not allow your mind to wander (in his definition an intellectual is one whose mind does wander) or have the take-off become so reflexive that you don’t notice small differences from the normal take-off.  It seemed to me that the similarities to medicine, especially primary care medicine, were apparent and so it also seemed to Dr. Atul Gawande.

  

Atul Gawande noticed the use of checklists in the cockpit of an airplane and it led to his writing “The Checklist Manifesto” which advocated for checklists in medicine, similar to the checklists in aeronautics.  In a real sense, Dr. Gawande was only harkening back to the medical school truism of finding ways to do repetitive tasks, such as the physical exam, in such a way that that steps in the processes were not missed and  abnormalities were more easily noticed.  Checklists are a way to highlight deviations from the norm and to ensure that we do everything in medicine in a disciplined way.

However, as we started to computerize our routines, and started to monitor them using modern information technology including EHRs and other electronic tools, we may have lost our way a bit.  The goal of routine leading to more easily noticing deviations from the norm took second place to pure efficiency and blind adherence to protocol.  The idea of the best doctors being those who were complete even compulsive and who found the black swans was replaced by the idea that the best doctor was the one who could prove adherence by having all the computer fields filled and prove efficiency by doing so most quickly. 

Computers allow us to copy and paste and pre-populate fields for the sake of efficiency.  If we do the same exam each time and nine times out of ten the exam is normal, doesn’t it make sense to just prepopulate the normal exam and doctors can then change the results as needed?  However having the areas prepopulated does collide with one of the secrets of medicine, namely that doctors are people and they work towards incentives and towards the path of least resistance as other people do.  When you have a computer record field that is prepopulated, and you don’t think something will be abnormal, and you have a waiting room full of patients, you tend, as a person, to just accept the prepopulated answer and skip the actual exam component.  By doing so, your organization (and more and more physicians are employees of larger organizations) will receive higher reimbursement for a more intensive exam because it is documented that more was done on the exam.  The physician will get a higher report card grade, leading to a better bonus because they did more complete exams or so the computer says. 

By the same logic, in the hospital setting, in which multiple physicians and nurses all having different roles and responsibilities may see a single patient, the ability to copy and paste someone else’s exam since it is likely to be the same as yours, is not seen as dishonesty or poor medicine, only as a way to be more efficient and more productive.    The fact that it removes an internal quality check and that each health professional may notice something missed by another is not factored into the development of the system.  If someone is sick enough to require hospital level care it only makes sense to have multiple checks in place to guard against mistakes that could cost someone their life. 

As an example: for one patient, the head, eyes, ears, nose and throat exam (HEENT) was presumably done because it was pre-populated.   In reality the physician skipped actually preforming that part of the exam.   The patient being seen had known Irritable Bowel Syndrome and came in with constipation and abdominal pain that was not very different from when seen during the previous visit.  The rationale was that the HEENT exam was bound to the unchanged from the previous visit.  But this time could have been different and the good doctor, would have either changed the pre-populated fields to reflect the head was not examined, jeopardizing his or her own job evaluation by the health care organization, or actually done the potentially unnecessary part of the exam, lengthening the appointment in such a way as to either not have time to focus on the problem at hand or run late in the clinic and hurt his or her service evaluation, also harming the job evaluation. 

This is not a problem with the information technology.  These tools can help us achieve and monitor the exam routines I learned more than 40 years ago.   What is missing is the proper design of these systems to support those noble goals of finding the black swans and focusing further testing and therapeutics, rather than the simpler goals of efficiency and adherence to a norm.  Missing from our currently designed systems are the aspects of human engineering that understand how patients, physicians, nurses and therapists really work and think.  We cannot afford to ignore the need for constant diligence to find something unexpected – something unusual that will make the health professional stop and think and perhaps save someone’s life.  It is not an impossible challenge.  It can be done and must be done for the promise of information technology in medicine to truly be met.  

Technology, the Triple Aim, and the Three Laws of Robotics

The triple aim of health care (improve the patient experience, improve population health and lower per capita cost) remains the driving force in health policy since Donald Berwick, Thomas Nolan and John Whittington first described it in Health Affairs in 2008.  Information technology is now being used in ways unimagined in the past to drive the triple aim, often with less success than had been anticipated.  The challenge has been and continues to be, using information technology effectively while maintaining the aspects of medical care that require the human touch.  The real challenge is how to harness the power of the computer in what must remain a caring pursuit. 

It is clear that our quest to incorporate computers into medical care and perhaps even direct medical care, risks losing the essence of medicine – the humanism and caring tradition that should be paramount.  I have written before in an earlier post of my own experience in the hospital and the fact that I felt ignored as the staff worked diligently to address the need to answer the computer’s demands (My Recent Hospital Stay and the Care of the Computer).   Yet I know that our ability to properly use information technologies will help improve medical care.  The real question is, and will be, will the health care system effectively use technology to improve care and foster the humanism inherent in care or will the technology itself define a new system which is driven only off the zeal for efficiency and the best science of disease, but which leaves the hands-on humanistic and spiritual tradition of medicine in the dustbin of history. 

When I was in college, in the late 1960s, early 1970s, I had a friend who was getting a degree in the early field of computer engineering and programming.  He was a strange sort of guy who used to rail about the evils of computers.  He would talk about how they were actually imbued with malign intentions and evil spirits.  When asked why then he wanted to go into computer science, he would answer that someone had to control them in order to defeat the evil that was inherent in them.  In today’s world, and especially in today’s world of computers in medicine, I wonder if he wasn’t on to something. 

Certainly in popular culture the ideas of computers having an evil dimension and even dominating humans is examined both by those at the cutting edge of science and by those in the arts.  Physicist Steven Hawking has been one of the more vocal scientists who have warned of the risk that computers, via the use of artificial intelligence, could, “spell the end of the human race.”  Bill Gates and Elon Musk have also voiced their concerns in calling for more research on the potential for computers to learn to “think” for themselves and evolve themselves and where this could potentially lead including the possibility of information technology controlling human action.  As recently as June of this year, Steve Wozniak, co-founder of Apple, created media buzz by declaring that in the future, humans will be the pets of computers.   Science fiction has explored this concept for many years, with Isaac Asimov inventing the “Three Laws of Robotics” which aimed to protect mankind from the control of machines.  He then proceeded to build stories to show the inadequacy of the three laws in protecting humans and humanity.    As written by Asimov the three laws are:

“A robot may not injure a human being, or, through inaction, allow a human being to come to harm.  A robot must obey orders given it by human beings except where such orders would conflict with the First Law.  A robot must protect its own existence as long as such protection does not conflict with the First or Second Law. 

The laws all stress the need to help men and women however Asimov’s stories show the reality of unintended consequences when good intentions can cause bad even evil results.  The reality is that when human arrogance believes that control can be total over the world around us (including the technology we create) the results often can prove us wrong in painful ways.  In medical care, this may prove to be especially dangerous as the results are highly personal and could be life-threatening.  Medicine is filled with low probability, high consequence events and information technology is invariably designed for populations, rather than the black swans – the unpredictable, rare but high impact event that can radically affect a person’s life.  Our systems approaches to date have also not taken into account the values, beliefs and social structures that we all live under. 

While the three laws of robotics do not directly address the same issues as the triple aim, the idea that certain hard wired goals, or laws can address all eventualities, and all permutations, is similar.  Both the triple aim and the three laws of robotics are inherently good: however any laws developed by man that are ultimately taken as holy writ and hard wired into computer systems, can be interpreted in such a way as to create pain for individuals.  In medicine, one of the dangers of technology being programmed to address certain components of the triple aim is that while service and quality are implied in the first aim, it is not stated clearly who defines either service or quality.  More and more we have studies that show that the “system” definitions as determined by those who design and run the health care organizations are different than physician and nurse definitions which are different than patient definitions.  A certain decision algorithm, being driven by information technology, may not support the goals of population health and lower per capita cost but, due to the unusual nature of the disease and of the patient’s psychosocial situation, may help that person in need. 

David Shaywitz, one of the best thinkers in health care and a blogger for Forbes, recently wrote a short blog entitled, “First, We Devalued Doctors; Now, Technology Struggles to Replace Them” in which he describes  the challenge of trying to have technology drive personalized medicine which depends so much on knowing the psychosocial dynamics of each person being treated.  He writes, “I realized there was something that seemed a little sad about the idea of developing extensive market analytics and fancy digital engagement tools to simulate what the best doctors have done for years – deeply know their patients and suggest treatments informed by this understanding.”

I agree.  It is sad that society may be abdicating the sacred trust of knowing the person to a computer rather than to a caring professional.  But it is not too late to change the new paradigm being written.  We can effectively find a way to control the computer and use the capabilities inherent in that technology to augment the humanism of the professional helping those who are in need.  We can prevent a purely technological approach to the triple aim going the way of the three laws of robotics in literature and being the fodder for tragic stories of individual pain.  It will take new information technology and new approaches that are carefully designed to foster humanism, as defined by the patient and the family.  Caring can be improved if we learn how to use information technology in a way that supports and helps our professionals focus more on understanding each patient as a unique individual and not just a set of pathologies.    My strange friend from forty years ago had confidence that he could fight the inherent evil of computers and I too am confident that we take harness the power of technology to improve the professionals’ ability to care for patients.

Apps, Attention, and Obesity

At one point in my career, since I have a strong background in nutrition (I am a Fellow of the American College of Nutrition and was board certified in clinical nutrition) I thought I would make my fortune by writing the ultimate diet book.  It was really very simple.  On each page I would print the following message:

EAT LESS AND EXERCISE MORE

Of course that was many years ago and now the current version of my book is achieved by creating the ultimate weight loss app.  The many apps that have appeared are as equally effective as my book concept would have been.  Or so it seems in a very nice study this month in the journal Obesity.  The Duke team, one of the best in the country in treating obesity, investigated whether apps on a cell phone helped young obese adults lose weight.  The answer was no.  In their words, “this behavioral intervention did not lead to significant weight loss relative to control at any trial time point.” 

In some ways, this is not surprising.  Shlomo Benartzi, author of the book, “The Smarter Screen” and a professor and co-chair of the Behavioral Decision-Making Group at UCLA’s Anderson School of Management, makes the point that computer screens, or cell phone screens are “changing the way we think making us more impulsive and reactive.”  For behavior change to occur especially when it comes to overeating, becoming more impulsive is not likely to drive a successful strategy.  He notes, that “people think faster on screens, and this can lead us to become more reliant on our instinctive responses and initial impressions, even when they are misleading and incorrect.”  So while the app may tell you that you are eating too much, it is unlikely to drive behavior to make you eat less impulsively. 

I can have multiple apps on my cellphone, to manage my diet, my activity, my sleep, my heart rate, my medications, and my medical records.  Many of these apps are based on the theory that people just need more information about what they are doing and how they are doing it in order to change.  The most elegant apps (technologically) also send messages to your doctor or to a nurse if you or your numbers are out of line.  However the question is whether all these fragmented sources of personal information actually help us to modify our behaviors. 

This focus on making it simple to keep track and give us feedback on our own activities appears on face value to have some benefit.  We can potentially be able to keep records and “share” the information with the doctor or a nurse who can then intervene.  However it also can create information overload for both the person who owns the device and the health professional expected to intervene on the basis of the information.  Benartzi points out the experience from the VA Health System which has wonderful alarms within its medical records which doctors routinely ignore because there are too many alarms and too little time and attention.  It turns out that too much information – too many alarms – leads to a “scarcity of attention” – a term used by Benartzi – and that scarcity is amplified in our screen based world.

Benartzi compares our new use of apps and computer screens to Adam Smith’s treatise “The Wealth of Nations” written in the early stages of the Industrial Revolution.   He writes, “While Smith associated scarcity with a lack of material resources – during the Industrial Revolution, people needed more coal and wood and land – the most important scarcities of the information age are psychological, and caused by our new abundance of information. “ 

When I was a health consultant, advising the Fortune 100 companies on the health programs they put in place for their employees, I would often point out that they were spending huge sums of money on multiple health programs which ranged from weight loss, to stress management to disease management to pharmacy management, each with their own separate information and interventions for their employees and the employee’s families.  I would then tell them that the only thing that they were actually achieving was confusing the hell out of the same people they were trying to influence and whose behavior they were trying to change.   While at that time I admittedly did not know all the decision science behind my consulting point, it turns out that what was obvious to me has now been proved experimentally in numerous studies. 

In the world of apps, it is hard to have a full picture of the person trying to make the behavior change.  Life circumstances may make good diet and exercise virtually impossible due to competing priorities, financial and time constraints, and emotional factors.  It is virtually impossible for an app alone to address these points that are unique to each individual and that are often constantly changing. 

In the article on cell phone weight loss apps, the Duke team makes the point that behavioral change principles are often absent in the app based commercial obesity products.  Current obesity treatment guidelines recognize the need to evaluate optimal frequency and duration of contact on an individual basis which is hard to design into a pure app solution.  They conclude that you need a combined approach that may require “the scalability of mobile technology, the social support of personal coaching, adaptive intervention design and more personally tailored approaches.”

Apps and technology do have a role.  However their role is in making already effective programs and approaches scalable, easy and consistent.  They are facilitators of solutions rather than independent solutions.  Part of our challenge, is how to use these powerful tools, in conjunction with people and other support and operational processes to truly help people to lose weight, control their blood pressure, take their medications and maybe even just enjoy their lives more. 

The apps alone, in providing information, will be hard pressed to address the psychological and life factors that require the personally tailored approaches the Duke authors in the article speak about.  In many ways, our challenge for the foreseeable future is how to harness the power of technology in the search for the more individualized approaches that address people’s health, their life situations, their psyche, and even their spirit in the quest to improve their lives.  

What Patients Value in Everyday Medical Decisions

Mary comes in to see her physician, who she has known for five years, clearly worried.  The trust between them is excellent.  Mary is 42 years old, works as a waitress and has struggled with Metabolic Syndrome.  It is hard to manage the high blood pressure, high cholesterol and the need to maintain a healthy regimen of diet and exercise when you are sometimes working two shifts, trying to manage two teenage daughters and have a husband who is a truck driver and is gone much of the time.  The partnership between Dr. Sheila Jones and Mary has been excellent through the years and that relationship has led to control of Mary’s blood pressure and lipid levels even while the ability to eat well and exercise is limited due to life getting in the way. 

Today’s visit is different.  Mary is frightened because two people she works with have been diagnosed with breast cancer, and another third friend has also just started chemotherapy for breast cancer diagnosed three months earlier.  She knows that none of them are direct relatives, and that she does not feel any lumps when she examines herself, however she wants to be screened.  Dr. Jones sits and talks with her, telling her of the data that shows little to no benefit to screening before age 45 or 50.  Dr. Jones knows that the American Cancer Society guidelines do say that women over 45 should be screened and women ages 40 – 45 who wish to have a screening mammography should be able to do so.  However the US Preventive Services Task Force (USPSTF) says that screening should start at age 50 and the healthplan follows those stricter guidelines.  The screening mammogram may not be paid for since Mary has no medical risk factors, only inordinate fear.  Mary cannot afford to pay for a screening mammography from her own pocket as money is very tight. 

Dr. Jones knows that, statistically, the test will offer no benefit.  For Dr. Jones, ordering the screening mammography will be a mark against her on the scorecard that the healthplan keeps and may impact her income and even more importantly, her reputation as the scorecard is available publically. Dr. Jones talks to Mary and tries to dissuade her from having any test but Mary is not to be moved.  She wants the test or will try to go elsewhere to get it done even if that means switching doctors which she does not want to do.  Mary needs the relationship with Dr. Jones to be strong as her Metabolic Syndrome successes to date may be compromised by a breakdown in trust and a transition to a new doctor. 

 Dr. Jones thinks through her options.  She can call the healthplan medical director who may help her by making an exception however the healthplan medical director is told very clearly that his job is to communicate and obtain complex medical information that may not be reflected in the claims data, and not to go against the medical policy of the plan.  The healthplan lawyers are fearful that making decisions against medical policy sets legal precedent and may be used as evidence that they are not consistent in their fiduciary decision making.  Trying to work through that system can be a nightmare.  Or Dr. Jones can order the mammogram, not as a screening test but as a diagnostic test – a “rule-out” breast cancer.  She can say that she feels something on physical exam even though she does not.  It will maintain trust with Mary and will allow Dr. Jones to continue to be seen as her advocate.  It will also save time when she has twenty patients to see that day.  Dr. Jones tells herself there is a small risk that a false positive will be seen on the mammogram that will require more testing, perhaps even biopsy but there is also an extremely small chance the mammography will show a true positive that was unsuspected!  We are dealing with statistical probabilities after all.  Yes it involves telling a small lie and having something paid for by the healthplan that should not be paid for however how much more will it cost the plan if Mary’s Metabolic Syndrome was totally out of control due to her losing Dr. Jones as a trusted physician and she ended up with full blown diabetes, heart disease and all the complications. 

I present this as a dilemma and I admit for some, it is not a dilemma at all.  Many believe that the doctor must base all their decisions on the medical guidelines, deny the test and move on to the next patient. Dr. Barron Lerner, a professor of medical ethics at NYU Medical Center recently wrote an article in the Washington Post asking why the American Cancer Society took so long to “ignore evidence about early detection” when they recently increased their the screening age from 40 to 45 in breast cancer screening guidelines. He writes, “in an era of cost containment, we need to prioritize payment for proven interventions.”   However we are also in an era of trying to determine what the patient values not only what medical protocol says.   

In an article in JAMA Lynn, McKethan and Jha discuss the challenge that, as their title states it, “Value-Based Payments Require Valuing What Matters to Patients.”  They make the point that we must ask patients what they value and then deliver on those priorities.  However we must acknowledge that patients often value reassurance and family concerns over the strictly medical.   They are often more influenced by friends and family than they are by statistics and expert opinions.  In Mary’s case, she wants reassurance and wants to know that her life balance will not be upended.  She sees her friends struggling with all aspects of their lives as they deal with this potentially deadly disease.  They approach her about caring for their children if they die.  She must know that is not about to happen to her and she wants that test. 

In the JAMA article, the authors say “serious, life-altering and ultimately life-ending chronic conditions, often in old-age, pose a particular challenge for the health-care system because traditional professional standards may not effectively address what an individual most wants.”  I take issue with that emphasis.  I believe that often the most difficult issues are the more mundane, everyday issues that physicians and nurses encounter in the outpatient setting in the course of their daily practices.   Just like the metaphorical flap of a butterfly wing in Brazil (as described by Lorenz in chaos theory), that may change the course of a tornado in Texas, these small interactions with patients everyday may have in aggregate much greater effect than the issues of the patient dying of end stage disease.

The real challenge then is how to build these shades of grey decisions into systems of care.  These decisions involve people’s lives and not only their diseases, and occur between doctor, nurse, therapist and patient every day.  How can we make them work for both populations and for individuals?  Ultimately we must build health care processes and value based payments that respect the biomedical protocols as well as the humanistic, emotional, social and financial concerns that drive people’s lives.  We must build this for everyday medicine and not just intensive care and end-of-life medicine in order to maintain people’s trust in health care and solve our healthcare cost problems.  

Is Bad Data Better Than No Data?

We are now in the era of “big data” which, we are told, will answer questions we could never answer and also identify individuals before they are sick so we can intervene and prevent their illnesses and their problems.  It is exciting, earth shattering and the subject of more articles, blog posts and conferences than one can shake a stick at.  However is it true?  Can “big data” or little data for that matter really lead us to salvation (medically speaking at least). 

Forgive me for the religious association however it often seems as though people are taking the pronouncements from the medical data gurus as being holy writ from God.  That bothers me a bit because fundamentally being a monotheist I do tend to think that we mere mortals are not godlike in our perfection, even if we are physicians and even if we are the even godlier than physicians, health policy experts.  There is an old joke about a good man dying and going to heaven.  In heaven he is shown around by one of the angels who take him to the dining hall where a line of happy people are patiently waiting their turn to pick up their food for the day.  He then sees one of the heavenly beings wearing a white coat with a stethoscope in a pocket cut into line.  He asks the angel who that is and the angel says, “Oh that is just God – sometimes he thinks he is a doctor.”  Since we are not godlike in our analyses, we must better understand what all this data means, and whether bad data is better than no data.  Ultimately we need to know how to use data to help those in need.  That is the essence of medicine – helping those in need.     

I speak as a physician and a health data expert who has helped health care organizations, government and large corporations design programs based on the populations they serve.   The work I do is data based and thus I must understand the strength and limitations of data.  I know that data can potentially be used to positively impact the use of precious health care resources and the care a patient receives.  At the same time, in my professional role, I am often the skeptic, challenging those people who claim the data holds magical powers.  Thus I enjoyed the article by Dr. Saurabh Jha in the Health Care Blog entitled, “Quality of Skepticism and Skepticism of Quality.” It was his section on bad data being better than no data that inspired this post.  He makes the point, and I admit it is a point I make all the time, that perfection is the enemy of good but does not stop there as many do. Dr. Jha understands the limitations and that while perfection is the enemy of good, sometimes data analytics do not even achieve the standard of good.   

What then is this data we are talking about?  All data depends on some information, being put into the right format to translate into the binary code that computers understand.  When people speak of big data, at this point in time, they are mainly speaking of claims databases which take billing codes from insurance claims and assume that they accurately reflect the care that is being rendered.  Billing codes are financial tools that drive payment and are used by providers to maximize their revenues (there are courses and consultants that constantly try to help people adjust codes to do just that) and are used by insurance companies to minimize payments.  That results in a game with only passing interest in accurately reflecting what is going on between a doctor and a patient.  With electronic medical records, the hope is that we will obtain more accurate information on what is really happening.  The funny part is that the most popular and widespread EMR gained its market dominance by being able to help hospitals maximize their revenues by capturing all services and materials for accounting and billing purposes, not by accurately telling the clinical story.

Saul Weiner and Alan Schwartz, who I have spoken about in previous posts, have looked at whether medical records actually reflect what happens in an interaction between doctor and patient and have found, by comparing tape recorded encounters, and using standardized actor patients, that the record does not!  Thus even the data inputs from a medical record, considered to be much stronger than the claims records have serious flaws. They point out in their research that the medical records leave out the emotions, competing priorities, financial concerns, spiritual beliefs and other aspects of being human that have a major impact on the care rendered.  They call this contextualized care and have found the ability to understand the person and not only the disease is much more important in driving quality care than the purely bio-medical issues. 

Data tends to suffer from observational bias, sometimes called the “streetlight effect” from a joke that scientists like to tell.  Late at night, a police officer finds a drunken man crawling around on his hands and knees under a streetlight. The drunken man tells the officer he’s looking for his wallet. When the officer asks if he’s sure this is where he dropped the wallet, the man replies that he thinks he more likely dropped it across the street. “Then why are you looking over here?” the befuddled officer asks. Because the light’s better here, explains the drunken man.  We tend to look at these big databases, designed and optimized for financial purposes, because the light is better, even though the answers, the insights, are more likely found in data ‘across the street’ where it is not captured. 

But advances are being made.  Lab data is now included in some databases.  Pharmacy information, which used to be separate, is now incorporated.  Methods using word search and mining audio databases of phone calls between providers, patients, and insurers are starting to be used with some potential effectiveness.   However the databases, on a sheer numbers basis, are still overwhelmingly claims or EMR based, both of which are designed for financial and not clinical purposes. 

All this brings me back to the question which titles this post.  Is bad data better than no data?  I do not have a hard and fast answer.  Bad data can push you to make bad decisions and when the data is big, the bad decisions can really be whoppers.  Big data used to identify individuals is especially prone to mistakes as the variability in people is far greater than can be seen from the financially based data in the databases.  The danger is that we assume that the data is correct.  We assume it to be useful.  Dr Jha takes exception to this and says, “The burden is on proponents of the metrics to prove their usefulness.”  Currently that is not the case and the burden is on those who question the usefulness.  That does need to change and to be tempered by the medical tradition of skepticism. 

    

None of this is to suggest that the use of data be abandoned.  Perfection is the enemy of the good.  Let’s just understand what we are looking at, what the limitations are, and stop using even good data as if it is perfect.  We need to take a breath and study the use of data to evaluate its effectiveness rather than assume that all answers lie in those numbers.   

Getting the Joke

Many years ago, one of my children at a very young age was misbehaving and unhappy in school.  As two physician parents, we had him assessed by a preeminent child and adolescent psychiatrist who lived in our area.  The late Dr. Sherman Feinstein was at the time the editor of the Journal, Adolescent Psychiatry and had been a faculty member at both the University of Chicago and the University of Illinois.  When my wife and I, both relatively young serious physicians would ask him for his diagnosis of our son, we would always answer, “He doesn’t get the joke.”  We would of course be frustrated but he never wavered in that diagnosis.  That son is now grown, successful and definitely gets the joke. 

Recently, another one of my sons started a project in which he drives around the country interviewing people to better understand the nature of spirituality in these United States.  His recent blog post was entitled, “On Absurdity.”  He states, “So way down there in the trenches of my belief is this incongruity, this inescapable absurd formulation of believing at once that, yes we are all holy, knowing godly beings….but that we are also Hobbesian animals, too often fighting and killing each other like mindless unknowing brutes.”  We, as health care professionals, often give ourselves godlike powers even when we understand that bad things happen over which we have no control and inevitably we will make mistakes and bad things will happen because we are human.  The joke is that life is full of irony and absurdity whether in health care or religion or everyday activities.  That is just a part of our shared reality. 

All this comes to mind due to a confluence of unrelated events.  First, I have been traveling the past week to speak at conferences (my previous two blogs were more directly related to those conferences).  The rooms were filled with earnest young brilliant people who all had the answers to questions which have both fascinated and eluded me for much of my adult life.  Somehow I was both energized and amused by watching them in their earnest certitude.  The ideas that technology, data and Internet solutions could be the total answers to our health care questions seemed a bit absurd to me.  Second, I have been writing a paper on approaches to quality improvement which quotes the quality literature and the goal of “zero defects” that I know to be theoretical but people often confuse with something that is attainable with the right technology, the right data and the right evidence based medical guidelines.  The idea that healthcare, with messy human beings who bring with them complex diseases, complex social connections, differing values and cultures and their own emotions and even dysfunction can ever reach zero defects is really pretty funny.  The third was a conversation with a very close friend of mine who is a brilliant physician and now has a cancer with a particularly poor prognosis. 

This friend is someone who is always a bit depressed and overwhelmed by life.  He and I live in different cities however we speak regularly and it is often to give each other as hard a time as possible.  He is cautious, exacting, and holds himself to an impossible standard of excellence that any other mere mortal would see as ludicrous.  Whenever we speak he tells me of all the little annoyances that are getting in the way of perfection and all of the different daily life issues that are clearly taking his valuable time.  I make fun of his perfection in ways only close friends can.  But not this time we spoke.  Now he spoke with a calm and even happy tone that I rarely hear from him.  All this while he told me that the studies he has reviewed suggest his mean survival is unlikely to be longer than 31 months.  The thirty one months is typical of him.  Not “between 2 and 3 years” but thirty-one months.  I commented on his happy demeanor and he agreed.  All of a sudden all the small issues that would ordinarily annoy him seemed meaningless.  He got the joke.  It may have taken him his entire life but the happy news is that he now got it. 

The joke is that we all make mistakes; we tend to believe we have more control than we truly do, and that most do not accept or even realize that life is a fatal disease.  It is that life and work are filled with paradox that cannot be reconciled.  It is, in the words of an elderly monk quoted in Yossi Klein Halevy’s book, “At the Entrance to the Garden of Eden” that we must “Stand up for what we believe in but leave the results to God.”  It is the old Yiddish saying that Man Plans and God Laughs. 

We tend to take ourselves, our work and our own pronouncements (like this blog) more seriously than we should.  Rosamund and Ben Zander, in their book, “The Art of Possibility” have a chapter dedicated to “rule # 6” which is “don’t take yourself so goddamn seriously.”  I know that I often do.  I just then remind myself as I write these blog posts, that I send them to the cloud with little knowledge of whether people will actually read them.  That joke is on me. 

This brings me back to the meetings I attended last week with all of those earnest, smart mainly young people.  I think they need to have more people my age and older attend.   I believe that if you survive into your 60s and still attend these types of meetings, you are more likely to get the joke.  Wisdom and experience may really be a manifestation of understanding the irony of life.  That perspective may help balance the sheer enthusiasm of the young smart intense people who tend to gravitate towards these difficult problems.  Wisdom may be defined by the understanding that no matter how serious our mission, and no matter how intense our focus and efforts, if we don’t fundamentally get the joke and take ourselves less seriously, if we don’t understand that success is defined as trying to get closer to goodness even if we can never attain it, we will end up locked into our own concrete paradigms and ultimately fail.  And besides, if you get the joke, whether you succeed or not you can at least enjoy all the effort.       

Breaking Down Barriers to Achieve Humanistic Care

I write this while at 30,000 feet flying from the high tech environment of Silicon Valley and the Stanford Medicine X conference to the suburbs of Chicago for the Health Enhancement Research Organization (HERO) meeting. One could not get more contrast going from the beauty of the Stanford campus and their high tech auditoriums and lecture halls to the windowless conference rooms of a suburban hotel.  Yet the two meetings are similar.  Both are indicative of the positive changes occurring in healthcare these days. We are starting to break out of our concrete silos in order to address patient care from the patient's point of view. It seems radical and that alone is indicative of where we have gone wrong up until now.    

At Medicine X, many of the discussions were led by patients or included patients who have found their voices through the blogosphere and through organizations such as Accolade which help people become more empowered patients.  They are partners in their care – patients who spoke of their own struggles to be seen as autonomous individuals and not as diseases. At the session I moderated, Mary Reese, who suffered with chronic pain for 11 years spoke about her frustration of having physicians not believe her pain was real, dismiss her ideas and concerns, and fail to find any solutions. To her credit, she always maintained respect for those physicians and believed that they were acting to the best of their abilities. Not once did she blame anyone for her predicament. Instead she spoke of her struggles to be a good mother despite her difficulty just standing up and walking and the loss of the ability to do all the things she enjoyed doing. She then spoke of the human connection she was able to form with Karen, at Accolade who in turn helped her find her voice and helped her find the right medical resources to finally end the 11 year nightmare.

While the conference stresses technology, this year the technology was presented as a tool to best be kept in the background with patients like Mary in the foreground. The patients are using expert systems and new approaches which are all but invisible to them so that simplicity can reign.  Mary was able to access the skills of Accolade and the expert opinions of Grand Rounds, both of which are made possible by combining technology and humanism in a powerful way. She is now enjoying her life, free of the debilitating pain.  She brought tears to everyone' eyes as she expressed her love for her supportive husband and children who stood by her during that dark decade of pain.

This dichotomy between technology and humanism is being torn down as we appreciate the facilitating potential for technology within the humanistic paradigm.  Touching people as people who have unique needs and wants and not as a set of symptoms or a standardized disease is required to build trust and create effective care. The newer approaches highlighted at Medicine X recognize this need to break the shackles of old paradigms. 

In the same way, at HERO, the emphasis has traditionally been on prevention. Research to determine the best ways to effect improvement in diet, stress management, exercise, smoking cessation, and other lifestyle challenges to prevent disease has been the main focus. That focus has sometimes created suspicion that it could create a tendency to blame the patient for the disease.  I have sat in HERO meetings with groups that advocate for those with diabetes, heart disease, and arthritis during which those activists rightly pointed out the danger of stating that everything is preventable with the proper lifestyle approach.  That “everything is preventable” myth could easily lead to regulations, laws and benefit requirements that impose harsh penalties for being unsuccessful in addressing behavior change as part of treating a disease.

At this meeting however, I will take the podium with Dr Adam Perlman, Executive Director of Duke Integrative Medicine and Associate Vice President for Health and Wellness at Duke University Health System to discuss how prevention techniques can be used effectively within therapeutics for people with illness. We will challenge the model of every illness being preventable and instead offer a model which uses diet, stress reduction, exercise, and mindfulness both in the context of treating disease and for improvement of well-being for those without disease.  Instead of treating the risk factor or the specific illness, new models will emphasize helping the person fulfill their own needs.  We will present a new model in which the biomedical is combined with an integrative model and an assistance model so that the patient point of view, regardless of presence of illness, becomes paramount. The old silos between prevention, wellness, and therapeutics must go.  The concept of disease has to change as we realize that our journey of life is dynamic.  Disease may be too static, too limiting, and may not adequately recognize that the same disease may impact different people in different ways at different times. We need to make these changes using technology but never allow technology to get in the way of the person’s feelings, needs, beliefs and values.

The fact is, unique individuals who get up every day, love and care for their families, enjoy life and  get sick must be helped using every tool in the health, technology, medical and social arsenal. They must maintain their dignity and their autonomy and be partners in all efforts whether those efforts are preventive, therapeutic or supportive. They cannot be forced to find fragmented programs and services through Internet search or desperate attempts at networking.

We have a long way to go in breaking down the silos and reaching the core humanism that must drive healthcare. The road will be difficult as the voices of those who look for science, or prevention or technology to be the only answer may dominate at times. However meetings like Medicine X and HERO make me optimistic that we are moving in the right direction. 

Medicine X and the Hopes and Fears of New Health Technology

This week I am on my way to Stanford Medicine X.  I will be moderating a session at this yearly meeting of futurists in health care.  Medicine X describes itself as a “catalyst for new ideas about the future of medicine and health care.”  As described by the organizers, “The “X” is meant to encourage thinking beyond numbers and trends – it represents the infinite possibilities for current and future information technologies to improve health.”     For this sixty-something year old physician, there is something about the term “X” which suggests some meeting of Gen X, Star Wars and IBM Watson.  I admit it the whole premise scares me as I wonder if the technologies we talk about will improve health or suck the humanity out.  Can an app hold your hand and help you feel less afraid as you face death and disability?  At first glance, the humanistic and perhaps even spiritual approach to medicine that I advocate seems to have little place in a room full of young techies who still feel invincible and believe that nothing will stop the inevitable march to automated utopian health care.  Happily, I do know that assessment of this meeting and the attendees is too simplistic, too glib, and yes maybe too jaded to reflect reality. 

One positive aspect of the health care tech and Internet revolution is that it has the potential to give more voice to patients, the individuals this medicine exercise is all about.  At this meeting, the voice of patients is heard with epatients, people representing patient advocacy groups and others who come from the health blogosphere who are present as full participants.  The session I am moderating will feature two physicians (me as moderator included), a clinical psychologist and most importantly a patient.  This is typical of many of the sessions at this meeting and represents an approach that I welcome – one that brings patients front and center in the discussions of the future of medical care.  It creates an atmosphere in which the patient is not merely the recipient of care but a true partner and ultimately owner of his or her own care.  In other words, this has the potential to democratize medicine.

In Thomas Friedman’s book, The Lexus and the Olive Tree which he wrote in 2000, he describes three democratizations associated with globalization driven mainly by the Internet – democratization of technology, finance and information.  Stanford Medicine X represents a fourth democratization – that of healthcare.  As we move away from the paternalism that marked my generation’s approach to medicine, we struggle to find a new model that gives more authority to patients, while not abandoning them to one-size fits all self-service medicine. 

Technology, thus far has not fulfilled that potential.  Instead we have electronic medical records that are designed to maximize hospitals’ ability to capture data for billing.  We have algorithm driven systems that ignore the context of a person’s life so that the mother who must choose between following a physician’s advice and caring for her child is labeled a non-compliant patient.  We have data analytics systems that are technologically elegant that monitor physicians for how they deviate from the guideline and punish them financially and by reputation even if they deviate by following the patient’s needs – which may not be medical.  The technologies now in use tend to restrict care and discourage the type of flexibility and individual creativity that is so necessary to treat complex human beings with all of their medical, emotional, and life needs. 

Technology can be either restricting or empowering.  “Can I move...I’m better when I move?”  I still love that scene from "Butch Cassidy and the Sundance Kid", the classic Paul Newman, Robert Redford film.  That scene represents the first meeting of Butch and Sundance when Butch is testing Sundance to see if he should be part of his group.  He is asked to hold his gun and shoot at a target.  He tries to move around however the person telling him to shoot insists that he “only shoot.”  He misses.  He then asks the perfect question, “Can I move?”  Butch’s assistant replies, “Move – What the hell do you mean move?”  At which point Sundance shoots while moving and hits the target.  Sundance then adds, “I’m better when I move.”

Some of us are better when we can bring our own voice, our own style and our own approach to problems.  Indeed some physicians, while excellent clinicians, may rail against technology driven systems that contain guidelines and algorithms which allow too little room to move.  The real question in my mind as I head west to Palo Alto for the meeting is whether the next generation of technology can better accommodate the challenges of treating complex individuals while actually improving medical care, emotional support and providing the social help that is so critical to health.   I am more optimistic when patients are involved in the discussions as they are at this conference. 

The meeting this year starts tomorrow which is also the Jewish holiday of Yom Kippur.  The holiday is marked by asking forgiveness not only of God, but more importantly from all those people we live with and work with.  In that spirit, I ask forgiveness from all of you.  Because I see myself as part of the changes that have been occurring in health care for more than a decade, I offer my apologies for harm done and opportunities lost.  I offer apologies for the technologies that have led to more confusion, less care and demoralization of patients and doctors alike.  My hope for the coming year, starting with Medicine X, is that we start to get it right and use technology to facilitate care and foster humanism.  

Quality Control and the Story of the Three Bears

The story of The Three Bears is ingrained in all of us from childhood.  The little girl discovers the house in the forest and finds three chairs, three bowls of porridge and three beds.  One is always too big and one is always too small (or in the case of the porridge too hot or too cold) and one is just right.  It often feels that way in health care as we try to find the right answer.  Health economists and policy people will say the problem is overuse – too much health care.  Patients often feel as though more can be done that is not being done – too little health care.  Finding the health care that is “just right” seems to be an insurmountable task both for populations and for individuals. 

Two recent articles, one in a medical journal and one in the popular press, both in narrative form, show us the challenge of defining quality – the just right of health care – and ensuring it occurs.   In JAMA Internal Medicine, Dr. Jennifer DeVoe writes about the care her father was receiving when at age 77 his emphysema took a dramatic turn for the worse.  He was admitted to the hospital where the doctors, following the correct evidence based protocols gave him oxygen, intravenous steroids and antibiotics They were about to perform a bronchoscopy in the Operating Room which was the correct procedure to diagnose the cause of this exacerbation although one carrying significant risk as he would need to be on a ventilator and getting him off the ventilator may prove to be impossible.  She asked her father how he felt about the bronchoscopy considering the risk as well as the likelihood that he would not survive without it.  When his daughter told him that he had a choice and did not have to have the procedure, he said, “Let’s go home.  What d’ya say?”  They were about to do too much even though the correct protocol said it was the right thing to do. 

They then transferred him to the in-hospital hospice program as he was too unstable to go home.  Again, his daughter who is a physician managed to help him navigate the shoals of a hospice team that wanted to stop his intravenous fluids as that is the correct protocol to follow when someone is on hospice care.  That was too little for this man who still had some goals to achieve.  To get it just right, his daughter had to help him so the intravenous fluids would give him enough energy to send birthday cards to his brothers and call friends and family to say goodbye.  By the end of the week he had died on his terms with his daughter’s help.  He did not have too much care or too little care and he died receiving care that was just right. 

The article from the New York Times, entitled, “A Doctor at His Daughter’s Hospital Bed,” recounts the story of a father, an experienced transplant surgeon, whose daughter is in the hospital critically ill.  (Thank you to David Florman for sending this article to me.) He sees that her pulse is elevated and her blood oxygen level is decreased.  The values had not yet reached thresholds which called for immediate treatment of shock although his experience told him that she was moving rapidly to a point at which therapy might not even help.   This experienced surgeon and father knew that if he took no action he might lose his 17 year old daughter.   Every protocol known to medicine holds that the treating doctor, not a family member who is there, should be making decisions such as whether or not to give fluids.  However this father takes bags of fluids off an emergency cart circumventing the normal processes and probably saves his daughter’s life.  He does all this with the nurse calling her supervisor to complain about this irrational family member acting against every hospital protocol.  But his daughter was receiving care that was too little and he stepped in to make it just right. 

I must admit, that as a father I have sometimes found myself in just that position of ensuring quality of care for a family member, often in ways that do not easily fit the protocols and the standards.  I have been accused by hospital staff of not following protocol and have never been sorry about the actions I have taken for my sons when I found it necessary.  (I have written about these situations in my blogs previously May 2013 and November 2014)  I identified strongly with Dr. Bud Shaw as he protected his daughter from the norms of the medical system.  Those norms can often be uncompromising and even uncaring when flexibility and care should be paramount. 

Both of these stories reflect the difficulty of ensuring that every person receives care that is just right for them.  It sometimes takes an understanding that protocols and guidelines are designed to be flexible and must be used in a customized way for each patient.  In order to do that, the health care professional must be constantly thinking about how the protocols may and may not apply. 

The unifying aspect of these stories is a commitment to the patient that is more than only a professional responsibility.  The stories reflect a customization of care that requires knowing more about a patient, as Jennifer DeVoe puts it, and also caring more about the patient as a person and not only as a disease.  They reflect a need for a family-like commitment to the patient.  While I do not expect, nor advocate that a family member be the patient’s physician, I do advocate following the old medical saying that every patient should be treated as though they are a loved family member.  Medicine of the highest quality must be a calling, not only a craft or a profession.  We must find ways to measure and ensure that element of customized care and not depend on adherence to specific protocols as the arbiter of quality so that the care rendered is always “just right” for that unique individual in need.    

Medicine, Politics, and the Individual Patient in Need

My friend, Mike Millenson recently “tweeted” a link to a heart wrenching story by a physician in Australia that deserves to be read by all concerned with patient care.  Dr.Ranjana Srivastava tells a story of discovering the true person behind the disease as she treats a woman who has metastatic pancreatic cancer who speaks no English and is awaiting word on her asylum request to stay in Australia. 

The story has many levels.  At one level it is about the physician who starts out annoyed by the non-English speaking patient who is missing appointments for her chemotherapy.  It moves into hearing the story through an interpreter of the patient being a former teacher, escaping from a war zone with two small children, after her husband had been killed.  It then moves into the struggles of being a refugee in a strange country, trying to work through the system to take care of her children, while addressing her own probably terminal illness.  The author eloquently defines the woman she is treating as one who is “cursed first by geography and then illness” as she communicates a subtle political message about the plight of refugees.  She writes,

“You see, most of my friends, even the professional ones, have never met a refugee – they form their views from tabloids, and the increasingly shrill sound bits of politicians.  But the thing is, when I look at you, I don’t see a queue-jumping, illegal, unauthorized, undocumented alien or for that matter, any of the names used to strip you of your dignity.  I only see a thoughtful woman, a loving mother and a vulnerable patient, with no husband and two young children…”

The story then ends with the physician returning to the safety of what she knows best and is trained to do.  “We return to your pain…”  The end is one of the powerlessness of medicine in a world that treats refugees poorly. 

I empathize with the politics.  I am the children of immigrants – refugees from Europe – who escaped the horrors of the pogroms and the Holocaust which was the fate for Jews in Europe in that era.  I do believe that we need ways to help those who must flee their native lands to find new and better lives for themselves and their children.  We must find policies to welcome those who cross borders; even crossing oceans for a chance and make them part of our own societies.  But I do not have the answers for the complex questions that are part of the dilemmas that governments face as they try to develop answers that are humanistic and also protective of the people they serve.  I recognize that there are rarely simple answers to these questions.  I am a physician and I must help people in their reality, not in the reality I wish them to be in.   I understand the desire of the physician who writes this as a clarion call to be more welcoming to those people who become refugees through their own courage and fortitude rather than any malevolence.   However we also must speak for this particular woman in need right now.   Changing policy and changing attitudes takes time and this woman with children who has an awful illness has no time.  Powerlessness and a return to the purely medical need not be the default for physicians. 

Therefore while I sit in awe at the writing ability of the physician, and am truly touched by the patient’s story, I can’t help but believe that it misses a critical element.  That element is what this woman, who has a horrible disease that is likely to kill her, really wants and what her goals truly are.

The physician has started to know who this person is, with the help of an interpreter however in this article she has yet to get past the refugee’s story to the person’s real hopes and dreams at that point in time.   I can try to guess based on all this woman went through to get her children safely to Australia.  I suspect it has to do with building a better life for her children.  I want to know what the physician might do to help that woman meet her goals and make a better life for her children even if she succumbs to the disease, as it likely.  I want to know if the physician can get past her own comfort level, dealing with chemotherapy, pain management, and the like to address issues such as the help the woman may need in shopping for food, getting her children to school, and planning for her children’s care after her death. 

I know that the physician may not be the correct person on the health care team to address all of these issues.  Other team members may need to take the lead to find ways to help the patient with these life difficulties.   However the physician should note that these important life issues may have priority over pain, disease and treatment protocols for that patient.  The starting point for all this must be asking the patient what her hopes and dreams really are as the most valid goals are the patient’s own.

 

Thus while I want physicians to take political stances as I believe all citizens should, and I want them to be skilled with the biomedical aspects of care, I especially want physicians to know who their patients are as people, as unique individuals and understand the patient’s values and goals.  I want physicians to focus on helping people through the difficulty of illness even if other healthcare team members take the lead in addressing those legal, social, psychological, financial and logistical issues.  I want every physician who sees a patient to also see the whole person and address all the issues that impact the person’s ability to deal with their life as disease gets in the way.   That is what defines medicine as the calling it is and should be.  

It’s the Little Things that Matter: Fighting Logistical Toxicity

Many people struggle with the life issues and the small decisions that occur every day when one is dealing with an illness or a family member’s impairment.  Whether financial issues related to the medical bills, attempting to make sense of insurance statements, trying to figure out who will walk a dog when going for a test or therapy, or just balancing a job schedule with appointments for doctors, the challenges are real and affect the quality of care and the cost of care.  All this is true whether you have a critical illness, a chronic disease, or an acute “minor” problem (I always teach that a minor illness is something someone else has and that everything I or someone I love has is major). 

Most attempts to address high health care costs do not address these small decisions that, in aggregate, have an outsized effect.  Current paradigms in the quest to lower health care costs usually ignore this approach of addressing the small everyday life disruption of all illness.  In the healthcare and health benefits world, we are told that focusing on the 20% of people who generate 80% of disease costs or people spending healthcare dollars in the last six months of life should be the focus.  Yet focusing only on the 20% of people and those in the last six months of life means we ignore many who are in need and who are flailing around a confusing and often impersonal system.  We are told that computer medicine driven by Dr. Watson from IBM is the answer and that the best doctor is a computer.  But computers cannot comfort someone who is dying or understand that an evidence based guideline that requires one to have daily therapy instead of picking up children at school is untenable.    Current paradigms often imply that the problem is that doctors don’t follow evidence based guidelines or patients are not doing what they should be doing.  Yet assuming doctors don’t know what to do and that patients are not acting in their own best interest is likely to be an overly simplistic and false assumption. 

We need new paradigms.  Often the issues are a lot smaller.  Like the man who could not go into the hospital for his worsening congestive heart failure because there was no one available to feed his cats, or the single mother who could not go to a specialist appointment for her worsening diabetes because she could not afford to lose another day of work since she had used up her sick time when her children had the flu, or the gentleman who went to the ER for a sore throat at 2 AM  because his only free time while working two jobs is between midnight and 6 AM. 

The right paradigms should address how to eliminate unnecessary health care costs and look at the world of health care through a patient’s eyes – a patient who has a family, friends and other priorities that are not health related.  The right paradigms should look at what really drives doctors and patients to make decisions that may drive up costs and bring little or no value to patients and families. Perhaps the real answer is to create new ways to look at the problems. 

In a recent post in Forbes, Elaine Shattner uses the term, “logistical toxicity” (first coined by Shelley Fund Nasso of the National Coalition for Cancer Survivorship) to describe the ill effects that the “administrative burden of healthcare” has on patient care and on cost.  While the article focuses on cancer care the logistical toxicity is seen with all illness.  These administrative burdens, and the competing life priorities that are often even more important, are difficult to manage when one is ill.  Physicians and other health professions cannot be expected to help with these life issues as they are ill prepared to recognize and address those factors.  Elaine Shattner in her post says,  

“Chores – like processing medical bills, holding on the phone for providers, filling out and submitting paperwork to insurers – can chew at a healthy person’s time, causing annoyance.  For someone who’s chronically ill, these tasks and additional, long-term responsibilities – coordinating frequent medical appointments, and arranging for time off at work, and for childcare or caregiving of another adult – compound the physical and financial toll of disease.”

It also goes beyond the chores themselves.  Those increased burdens and those competing life priorities create tremendous emotional turmoil and can cause a sense of social isolation.  One feels as though there is no one to help, because the benefits and the health delivery systems have become so disjointed that they cause headaches instead of help.  As Ms. Shattner says, “The potential failure to take care of everyday tasks can lead to feelings of defeat or helplessness, besides exhaustion.”  Your doctor does not really understand your health benefits, and may or may not even ask you about the life challenges that are getting in the way of the treatment of your illness – that logistical toxicity.  Your healthplan is willing to help you understand your benefits and claims, but not deal with the life issues that are sitting in the background affecting everything else. 

When we started Accolade, we realized that the health care system had become so complex and so difficult to deal with that it could be dangerous to people’s health and could actually increase costs.  As we looked into the problems from a patient’s point of view, we found two parallel systems at play – a health benefits system that was attempting to put incentives, rules and regulations in place to police care, and a health care delivery system that was attempting to become more efficient and of higher quality by a division of labor approach in which higher paid team members, such as physicians, were only involved in activities that made the most of their expensive time.  The algorithms driving care were designed to prevent errors and theoretically improve care.  However, from the patient’s point of view, all this created fragmentation and a movement towards “one-size fits all” medical and health benefits approaches with its associated depersonalization.  If you didn’t fit in to the rules and algorithms, you suffered.  The paradigms for efficiency, we found, were often contributing to inefficiency and lower quality care from the patient’s perspective.   Those paradigms that were being used were often not helping people in need. 

We decided to create a new approach and a new profession based on a belief that all people with illness of any type need help, not just those people with high cost complex illness.  Our hypothesis was that costs would be lowered by immunizing against logistical toxicity, and supporting people through the emotional roller coaster that is associated with illness.  We tested whether we could impact the changes in the social structure of family and the life challenges that are associated with illness of any kind.    All illness, even “minor” illness can be disruptive and interfere with life context while inducing fear, sadness and anger. So we built databases, trained professionals to deal with this toxicity, and developed operational processes.   In a sense we went about building immunization, antidotes and treatments for logistical toxicity and the social and emotional toll it takes.  We knew that this was not a simple problem but something that demanded a new profession based on trust, with specific expertise and the support of proper data and information systems.

We determined early that just solving the problems as they occurred would not be effective.  We had to provide ongoing assistance to help people avoid these problems in order to be able to solve issues early so their toxic effects would not multiply and become petrified and even more difficult to reverse.  We learned that when people are faced with logistical toxicity, they develop suspicion and lose trust in the system to a point at which it is hard to overcome.  We found that we had to form trust early in the process and even before the problems occurred.  In the 8 years since starting this new model, we have proved it works – costs are lower and from a patient’s point of view, care is better.

I am fundamentally optimistic about health care as long as we continue to challenge existing paradigms.  I believe that our initial experiment at Accolade, and other similar approaches that address patients as people and not diseases, will become the norm.  New professionals will help address all of the challenges of illness, not only the disease pathology, providing value from a patient’s point of view.  We will continue to find new approaches that will eliminate the scourge of logistical toxicity.  Most importantly, we will not allow health care to become so rigid that it ignores the infinite tapestry of our diverse population and the unique life issues that each person brings.  

Confusing Populations with Individuals in Health Care

The doctor patient relationship is a sacred one that is ultimately driven by a person in need, putting their trust and even their life in the hands of a health professional.  The bond between a doctor and a patient is formed with the expectation that it will be met by total dedication to the patient’s well-being by the health professional.  However, in recent years, physicians, nurses and others in the caring professions have been challenged to take a broader societal, or population view of those they serve, especially when it comes to cost. Our current high cost of health care can limit needed access to care with the burden often falling on portions of our population who are the most at risk for health problems.  Who better to address this than the health professionals who care for people, so the argument goes.  The theory is that the population view, especially when taken by individual health care providers, will provide more equity in health care and better treat all those in need.  The physician and the health care team then becomes the steward of the health care dollar for our society as well as the caring agent focused on the patient.  But is this an appropriate role for the physician?  Do these newer efforts towards placing societal costs in the equation of “best medical care” for an individual risk creating a system in which physicians have more responsibility to their particular system or to the total society than to the actual people in their care?  

The American College of Cardiology and the American Heart Association (ACC/AHA) have just published a joint statement on cost/value methodology in clinical practice guidelines and performance measures.  They have tried to thread that needle of societal needs for cost control and individual patient care.   The result is a properly nuanced approach that acknowledges the difficulty of the task as well as the current reality that the challenge cannot be ignored.    They note, in their executive summary that “from a societal policy perspective, a critical healthcare goal should be to achieve the best possible health outcomes with finite healthcare resources.”  They further note that “individuals bear the burden of adverse health outcomes, yet costs typically are shared by society (e.g., by families, employers, government, premium payers, fellow employees, taxpayers).”

All true.  Yet what should the role of the physician be?  And how should guidelines from esteemed organizations such as ACC and AHA address these issues when they set standards for individual care?  Should the physician follow a guideline that directs the care they render to be influenced by the fact that the treatment may not be of high value to the payer even if the doctor and patient believe it to be high value in that particular case for that particular patient?  Perhaps a bigger question to ask is whether the patient should trust a doctor if the doctor is being driven by a societal equation instead of an individual patient equation.  Ultimately, this is a question of whose interests – society’s or the patient’s – are paramount when the medical decisions are being made.  I believe that in all cases the physician should focus on the individual patient’s interests for that is the essence of medical care.    While societal costs are extremely important and must be taken into account when setting health policies for a nation, there is something different that is going on when a patient is in an exam room with a doctor, a nurse, or another health professional.  That difference is the sacred trust when one person opens themselves to another in the hope of being cared for when in a time of need. 

But there is often less conflict here than may be apparent.  When the patient’s values and goals are paramount, cost often enters into the equation – it just isn’t the societal cost but the individual cost.  Physicians today are not very good at assessing their patient’s goals, needs and values when they are outside of the purely clinical.  When those individual goals enter the realm of finances, competing priorities (such as taking care of people they love), or the patient’s spiritual needs and beliefs, as evidenced by research done on context by Saul Weiner and Alan Schwartz of the University of Illinois over the past fifteen years the physicians’ ability to recognize, assess and address those needs is poor at best.   We know that patients assess the treatments recommended by physicians based on their own internal equations and cost is often a component of those individual decisions.  The good physician, who forms a true trust bond with the patient, must take that all into account.  When that happens, total societal costs are more easily controlled, as has been previously suggested in a study done by Weiner and Schwartz in assessing the costs of “contextual” errors in health care.  We see that at Accolade as we help patients address their life needs, find their voice and communicate their goals to their doctors, nurse and therapists and see total costs go down. 

It is clear therefore that, as the ACC/AHA statement suggests, that “the need for greater transparency and utility in addressing resource issues has become acute enough that the time has come to include cost-effectiveness/value assessment and recommendations in practice guidelines and performance measures” but the inclusion of “performance measures” does worry me.  If doctors are judged by their ability to meet societal standards of cost effectiveness will that change the doctor/patient relationships and the agency that the doctor now has for the individual in their care?  We clearly need more transparency and we must be able, as health professionals to translate that cost information into useful knowledge to help patients with their decision making however our performance measures should be based on how well we address those individual health care cost needs and the value for that individual.  That is different than being measured by how well we meet the societal goal of lowering health care costs.

The ACC/AHA statement does address how these guidelines are to be used and makes the statement that “the value category should be only one of several considerations in medical decision making and resource allocation.”  But resource allocation for one patient is an entirely different issue and must be based on the patient’s values, not the values of the physician or society.  In the published article, the ACC/AHA committee rightly states that “Care is of high value if it enhances outcomes, safety, and patient satisfaction at a reasonable cost.  Care is of low value if it contributes little to outcomes, safety, and satisfaction or incurs an inappropriately high cost.”  I would add the words “from the patient’s perspective” to those words.  Ultimately, we must understand that as physicians – as health professionals – we are servants to and advocates for those in need and we must define outcomes, safety, satisfaction and even costs from the patient’s point of view.  Until we develop guidelines and performance measures that understand and acknowledge that fundamental agency of the health professional for the individual patient, we will neither save money nor improve care but will only erode the trust that is the cornerstone of health care.