The Central Myth of American Medicine

In recent years, there has been significant progress in trying to predict future disease both by statistical and biological methods.  The combination of genomics and artificial intelligence has proved to be quite powerful in moving us along a path that can drive better disease prediction.  I spend most of my working hours with this effort driven by my assumption that early warning will lead to better interventions to fight disease and ultimately to better health.  But I can’t be 100% sure. What if all those predictions only cause anxiety and confusion? I thought about this as I read an article in the WSJ about too much messaging, coming too early dulling our reactions.  This was in the context of storm prediction but similar principles apply in health and disease.  Ultimately, with both storms and impending illnesses, the questions are all about what can be done to either prevent or at least mitigate the potential catastrophe.   Do you want to be able to plan, to take medication to lower the risk, to change your lifestyle? Or will all that information just create anxiety, depression and contribute to a nihilistic type of fatalism?

In the case of storm prediction, the article pointed out that “More accurate data gives more time for emergency planners and residents in a storm’s potential track to prepare. But the long lead-up also can result in saturation storm coverage and social media hype that leads some people to tune out.”

It goes on to note that “continual storm coverage was a source of annoyance for many and led to fatigue for some, adding to concerns that information overload would lead them to miss key communications.”  The earlier the information is obtained and given, the more likely it is for the information to inform, but also the more likely the information will ultimately be wrong. Time is an important variable, and it has a habit of changing things in the weather as in life.  

Health plans, health systems, private companies, and government are all using huge data bases of claims, medical records, genetic data, and anything else they can find to create algorithms or formulas which can predict our future health.  These efforts are having some success, and as someone who works in this area, I expect our abilities to increase. But will we actually be helping by predicting? Will we be contributing to an unhealthy focus on disease prevention instead of healthy living or to a numbing of a message that change is needed?

The questions we are attempting to answer almost appear to have a biblical quality….Who shall live, and who shall die?  Who shall be infirm and who shall be healthy? I am Jewish and will be stating words very similar to these in the Rosh Hashana and Yom Kippur services which are around the corner.  We say this as we pray for forgiveness and hope that in the coming year we will be blessed with health and happiness. It does seem almost God-like to be able to predict in this way.  But it’s important to remember that our predictions are never 100% accurate, and that even if they are, we don’t really know if the predictions will help or not.

The optimists among us believe that these predictions will allow us to intervene and help prevent the diseases before they appear.  The pharmaceutical companies believe that they can develop medications to forestall and prevent diseases before the illnesses express themselves to the detriment of the patient.  Those in the wellness fields believe that changing lifestyles will forestall the “ultimate decree,” as is said in the prayer book for the High Holiday services.  

But we don’t really know, and we also don’t know if we will just be creating undue anxiety and depression.  We don’t know if we will contribute to information overload that does not really help those we hope to impact most.  We don’t know if our new medications and our new approaches to intervention will ultimately lead to unintended consequences that may be harmful.  

We don’t even know how much people want to know.  We do have experience of a sort from the testing for genetic diseases that offer people some predictability.  Huntington’s Disease is a genetic illness and was one of the first genetic diseases for which there was a definitive test to see if someone was a carrier, or likely to have the disease.  It is a disease in which brain cells are killed and which leads to death. Since we can identify people who will likely develop the disease, it is informative to see how often people want to know.  A review from the BMJ showed that only 10 to 20% of those people at risk for Huntington’s Disease end up being tested after being approached and offered genetic testing.  The other 80-90% prefer not to know.  

Perhaps they are right.  After all, life is not about avoiding illness.  Rather it is about enjoying your time on earth and making a difference to those around you.  While health is a central element, it is not the only element. Living your life with a focus on avoiding disease may be the right decision for some, but for others that focus on disease may prevent them from focusing on family and friends. 

All that is not to say our prediction efforts and our attempts to decrease health risk should stop.  It certainly is a big part of what I do every day and I am proud of my own work and believe it can improve people’s lives.  All this brings me back to the title of this blog post. The central myth of American medicine is that Death is Optional. It is not.  Life is a fatal disease. I for one believe that the efforts to predict disease must be tempered by the knowledge that we must use predictions to help people live the lives that they want to live until the moment they die and allow the focus to be on living rather than disease prevention at any price.  I question whether the desire to tell everyone everything about the future may end up making us sicker than we started.  

Tracking Hurricanes and Predicting Illness

As I watched the slow moving disaster known as Hurricane Dorian this past Labor Day weekend, it struck me that the prediction models for both the direction and strength of the hurricane kept changing.  The striking fact that was clear as I sat in the safety of my Chicago condo, was how hard it is to predict exactly where a hurricane will go and how strong it will be.  Different models had it originally heading across Florida into the gulf and later models were constantly being adjusted and changed.  Eventually, it hit the Bahamas, made a hard right turn, and it did not hit the American mainland until it meandered up the eastern seaboard to North Carolina.   An article in the Wall Street Journal about difficult in creating the predictions quoted Matt Lanza, managing editor of Space City Weather, as stating, “I’m constantly amazed at what just one tiny change can do to the whole picture.”

I understand.  I have spent a good deal of time and effort leading a group of very smart data scientists, clinical informaticists, health economists and statisticians in developing algorithms to predict the “path” of illness in order to better intercept and intervene before disaster hits.  We have the advantage of using the largest commercial claims data base in the US and possibly in the world, with over 40 million people per year.  It is also possibly the most up to date health care claims database, as it is refreshed monthly, and the database with the greatest claims history, as it reflects 10 years of claims.

Yet even then, it is very difficult because “one tiny change” can have a dramatic impact.  Medicine and health care are filled with low probability and high consequence events.  Life is as well.  Recently, we have been working on a model to predict people who are likely to be sick enough to generate $250,000 in claims in the coming 12 months.  It means predicting any illness, all of which have different profiles, and different patterns that lead up to catastrophe.  Thus, there are many numerous variables to predict numerous disease and combinations of diseases.  This creates a data science problem that belies an easy solution.  It means identifying someone who will be one of the 1 in 7,000 people to be sick enough to generate $250,000 in costs.  The nature of the prediction  challenge is also to identify those who are likely to have an illness that we can impact with proper treatment and/or proper support to improve the outcome.  A missed prediction could mean a person has a much worse outcome, even death or disability.  A personal “hurricane” that one may not be able to withstand.

The data that one uses must also include all factors that are present when a person becomes ill.  That means including data on emotions, social factors, finance and culture, among others.  If someone you love is in an accident and you are speeding while distracted while going to the hospital, you are more likely to have an accident.  That is a data point that medical records or health care claims will not reflect.  If you have just been fired from your job, that is another datapoint.  If you are poor and/or lonely, these are extremely important factors in trying to predict illness.  It is not just biology.

But biology is the central pathway, and claims databases, while reflecting medical care and medical interventions and encounters, are basically financial databases.  Electronic medical records, genomic information, and social information must be integrated into co-mingled databases to make analysis and, more specifically, prediction more powerful.

With healthcare, as opposed to hurricanes, there are issues of privacy and confidentiality that bring legal and ethical issues into play when combining data.  Dorian does not care if we know the details of its hurricane force winds but Jane Smith might care a lot that we are using her genetic information, combining it with her financial profile, any police record, her family dynamics, her friends and her spirituality to try and predict any illnesses and healthcare needs.

All these data feeds help us to become more accurate, but even if the privacy concerns are overcome, there will always be uncertainty. Progress will increase with each new insight, but someone can always trip in their own home and break an arm.

With each new insight we gain more predictability. Recently, in trying to predict patients who are likely to have very high costs due to critical illness, we found that the “velocity” of their medical activities was a useful variable in building our models.  To calculate this requires a different algorithm to feed the algorithm.

In other work I am doing, we have found that knowledge of the genetic makeup of the bacteria that are in a normal human intestinal tract, part of the microbiome, can help predict things like sensitivity to medications, propensity to diabetes depending on diet, and disease activity in someone with Inflammatory Bowel Disease.  Thus, the microbiome data has become an important variable in predicting disease.

And yet, our society demands perfection and immediacy.  In another article about forecasting the path of a hurricane, it was pointed out that forecasts tend to define a forecast cone.  The forecast cones have gotten significantly more narrow in the last ten years due to better measures and techniques, but there is still a 1 in 3 chance that the hurricane will be outside the cone completely.  That is far from perfection.

I believe that in healthcare, it will be no different.  We will make progress and get better with our predictions, but we must always remember that there will always be uncertainty in medicine.  We will need to better differentiate between the need for huge databases, such as the one used by my team, and the deep data that will come from more knowledge of the individual, and how the the two will interact.  In a future post, I will talk more about big data and deep data and how they both must be used.  Ultimately, there will always be some uncertainty, but we can decrease it incrementally in our quest to improve care.

Restarting - It Appears I Have More to Say

I have taken a hiatus of a few years from writing these thoughts, opinions, and occasional facts about health care, health economics and health benefits.  The hiatus came from a lack of time, a shift in my focus, and a need to rethink my reasons for writing.

During this writing lull, I have continued to fight for approaches to health care that are data driven and humanistic.  I have continued to fight entrenched ways of doing things, the use of health care for political means,  and the decisions made based on poor judgement, faulty data, and over reliance on blunt instruments.  I have continued to fight organizations that make decisions based on protecting their own positions and organizations rather than understanding and addressing the needs of people who are suffering.

I have seen health care attorneys look at all health care through the lens of the contract, health care data scientists look at all health care as new data algorithms to be developed, and internet entrepreneurs look at health care as their latest app.  With all this, I have also seen physicians move from being independent patient advocates to being shift workers paid by large systems whose goals sometimes seem to be more focused on margins and growth than on caring for those in need.  I have seen ego and wealth generation driving decisions instead of healing those in pain.  I have also seen brave, caring professionals who get up every day to fight for the patient.  I see those people getting tired and beaten down by the system in ways that are sad to watch.

So I will start again to put down my thoughts and observations in writing for anyone who cares to read them.  My first blog post will be posted shortly, and I thank those who do take the time to read it.

Healthcare, Humanism and the Humanities

I am returning from a prolonged trip in France visiting my son, daughter-in-law and nine month old granddaughter followed by a few days in Amsterdam. In many ways, the trip has been an emotional journey more than anything else as my wife and I were able to hug, and play with Hannah, our French-American grandchild.  

That trip was all about emotions, history, art, and family.  It was about different cultures and traversing lands with different languages.  In the glow of that trip, I can't help making some observations on health care.  I ask myself whether, in a humanistic endeavor such as health care, do we leave out, or under emphasize those aspects of life I focused on during my trip.   

In France, I lived with my son and found myself in the rhythm of French life. It is a life that reflects French culture and values which appears at first glance to be focused more on the everyday than the goal oriented life that I see in the United States.  There is a saying that people in the US live to work and people in Europe work to live and I wonder if there is a kernel of truth to that. Just to clarify, I am speaking of small town France and not the frenzied Paris life that is similar in major cities worldwide. One can find a closer parallel in small town America than one can probably find in Paris to my French trip.  There appears to be, in the tradition of Rousseau, great value given to the logic of a balanced life. As Rousseau said, "Happiness: a good bank account, a good cook and a good digestion."

Our life there took on a certain rhythm that did revolve around our meals.  This is especially meaningful to me as a gastroenterologist and expert in nutrition. Meals were savored over time with real focus on the food; stores closed midday so storekeepers could enjoy their own long lunches; walks were taken slowly after lunch. It took a while for me and my wife to get comfortable walking slowly.  In many ways, what we now call mindfulness seemed to be part of my son’s family, and my daughter-in-law’s extended French family daily living. Of course people work and are productive and have all the worries that people all over the world have.  The attitudes towards those needs appear to be different.  We would stop in the afternoon at a cafe to give our granddaughter a snack as we sipped wine and watched nature, people and the world around us. History was all around us as these buildings we sat in could have been built in the 1600s.or 1700s.  I returned feeling like I had done nothing but eat and found that I had lost weight.  (I discussed this after a previous trip to France in a blog entitled “How I Spent My Summer Vacation and the French Paradox”). 

On our stop in Amsterdam on our way back home, we went to the Van Gogh museum and I was struck by all the medical aspects of his work and his history.  The painting “Two Hands” that show working hands that are thick from manual labor but also seem to have some contractures that may be indicative of arthritis show the intermingling of life and work.  His “Head of a Skeleton with a Burning Cigarette” should be used in programs to stop smoking. 

What I am describing, in an academic sense may be seen to be part of cultural anthropology, art history, sociology, philosophy, and history. Throw in a dose of academic French, enology for all the wine we had and a bit of high level culinary art and it became apparent that our experience in France and Amsterdam can be intellectually understood from study of the humanities rather than just, for example, from geography. Just as one cannot interpret a trip such as ours as being only about geography, one cannot interpret a trip to the doctor to be only about biology. 

Life is all about balance and good medical care is all about life.  It is not only science.  Our health professionals should be well versed in disciplines that help them understand that balance.  That may mean more use of literature and more instruction in psychology, sociology and anthropology.  I don’t have an answer of a specific curriculum to recommend.  I only know that we must do all that we can to prevent our medical and nursing education from driving the humanity out of the talented people who choose those paths.

There is a concept that is reflected in a number of sources, most notably the Zohar, the Jewish book of mysticism, which states that evil occurs when there is an imbalance between love, wisdom, justice and glory.   In some ways, the science of medicine often reflects the justice and the glory.  The evidence based algorithms and those in medicine who believe that they have all the answers to the dilemmas of health care produce a certain regimentation which creates a framework for justice and the entrepreneurial and the academic aspects of health are often driven by those in search of the glory.  While individuals have tremendous love and wisdom, it may not be built into the system to the degree needed to prevent a system designed for good from having evil elements.  I remain optimistic that movements such as the Narrative in Medicine movement which stresses the importance of storytelling as part of medicine will take hold and be important in the education of health professionals.  In order to have that happen, we need to bring more humanities into the teaching of medicine and nursing.  After all, we want the health professionals who will be at one point or another caring for all of us to be holistic caring people who understand the impact the illness has on our life as well as an understanding of the illness itself.  

The Balancing Act of Health Care

Closing one chapter and opening another is an opportunity for reflection.  I have used the two months since I last wrote a post to determine how I can continue to have an impact on health care, while having the most fun as my work and life journey continues.  That has created more questions than answers and more shades of grey rather than sharp lines of clarity.  However that is good.  I have always believed that questions are more important than answers and that those with perfect clarity about a situation just do not understand the situation well enough. 

So it is with health care.  Health care is filled with questions, with difficult choices and with confusion for patients, for health professionals and for health policy experts who want a neat and clean answer to our system challenges.  In other words, health care is a terrific reflection of the human condition and must be seen as a part of the complexity of life.  While the understanding of human physiology and pathology may one day be totally answered by science and amenable to computer generated algorithms (although I doubt even that), health care has always been about more than biology.  Emotions, social interactions, finance, culture, communication, spirituality all are part of health care and they don’t all follow simple biological rules.  Even the biological sciences obey the old saw that the greater the knowledge of a topic the more unknowns that surface.  Good scientific answers tend to elicit new and more questions rather than simply settle old questions.  An economics joke is told by doctoral students (mentioned in a Bloomberg Business Week article) that the questions on the doctoral exams haven’t changed in 50 years but the answers have.  The same can be said of medicine.  In health policy debates we often hear the term “scientific fact” however the true scientist, including the true medical scientist, knows that “facts” are never written in stone and that the teachings of today tend to be proven false tomorrow. 

Since health policy is involved with politics, and politics thrives on simple answers and sound bites, it is no surprise that in health care policy, there are always those who claim to have the magic bullet – the answer – usually based on scientific fact.  That solution is often manifested as new laws and rules to address high costs, inequalities, lack of access to care, and potentially poor quality care.  However they may not address the constant trade offs we must make as we deal with the need for access to good care for all and the need for individual autonomy, individual respect, and customized solutions based on the person and their unique situation.  As Isaiah Berlin has said, “Liberty for wolves is death to lambs.”  We may produce liberty and equity and not pay attention to the lambs that are being eaten by the system.  New regulations and laws may also have the effect of pushing professionals to focus more on proving one is following the rules than encouraging those professionals to actually care for those who are in need. 

In this spirit, I have my own “top ten list” of unanswerable questions related to my life’s work of improving access to quality care.  They include:

1. How do we fit the black and white of contracts, legislation and regulations into the shades of gray that good medical care requires?
2. How do we balance the needs of a population and a community with the needs of unique individuals within that community?  As an example, how do we make the choice between the cost of care for a healthy 95 year old that may benefit from complex surgery and the thousands of children who could be immunized using those funds? (I believe we can and must support both). 
3. How do we address the fact that human physiology is the same around the world however the non-biological factors that make medical care more than biology vary immensely from country to country, state to state, community to community and even person to person? 
4. How do we create efficient systems and smart systems that can assist health professionals while encouraging them to keep their focus on the individual patient and not the computer screen?
5. When we speak of outcomes and quality, from whose point of view are we looking?  Is it the patient, the family, the doctor, the system or the population?  Often outcomes and quality are in the eye of the beholder. 
6. How do we monitor care to ensure it is high quality while also allowing for the modifications of care depending on the life context and the unique situations of the person in need? 
7. How do we build systems that allow for innovation, even with individual patients, but still protect patients from being subject to experimentation and poor care?
8. How do we encourage good health habits while not creating a system that punishes those who do not follow those habits? 
9. How do we prevent care equity becoming poor quality, least common denominator care for all?
10. How do we acknowledge health care as a spiritual and social need and not only a biological one?  

These questions and others like them offer opportunities to continuously fine tune and change our approach to the problems based on the specific community, the specific patient, the specifics of the health care resources that are available, and the times we live in.  We must have systems and laws however our systems must be flexible enough and smart enough, supported by smart caring professionals, to address all of these dilemmas.  We are in a constant balancing act trying to make hard choices and doomed to never reach perfection.  However our attempts to try to be perfect will lead to better care for all.  We must recognize that arrogance is the enemy, humility is needed and questions may not have a “right” answer.

The processes we build and the regulations we put in place impact populations and individuals who may not be in the center of the bell curve but off to one side.  All systems and rules produce unintended and potentially negative consequences for those people who do not fit neatly into the norm and the processes must allow for a mass customization to address those atypical people, who may in aggregate be the majority of patients.  In dealing with life and death health care decisions, care and sensitivity to the patients, their families, and the health professionals manning the front lines of health care must be emphasized and our systems must not only allow for that care and sensitivity but encourage it.  I, for one, am excited to be on this journey even as I know that my solution today may need to be changed tomorrow.  Such is the nature of health care and of life.  

Moving On

For the past nine years, I have been involved in building a company, Accolade, dedicated to experiencing the health care journey through the eyes of each unique individual and family who are in need.  Starting with a one room office, and a small team led by Tom Spann, our CEO, we spent years finding solutions to the problems inherent in experiencing illness in an attempt to make that journey as simple, and as stress free as humanly possible – all that with the knowledge that there is no more stressful time than when you or a family member is ill.  In addition to medical and insurance knowledge, we brought into the equation information on decision science, the psychology of persuasion and behavioral economics and created a coherent set of processes that we could manage while making it seem to the people we helped as if it were effortless.  We created simplicity during extremely complex and emotional times for people.   This took immense work and creativity as there is no more difficult task than creating simplicity out of the chaos that is often experienced when ill.  It meant rethinking how to engage people and how to create the type of trust that allows the right type of help to be offered and to be accepted.  It meant understanding a person’s need for autonomy and to be seen as unique rather than as a disease or a demographic.  It meant understanding that the experience of being sick is more than biology and insurance benefits but is also emotional, social, financial and even spiritual.  It is intensely personal for each person affected and our methods and procedures had to find commonalities while recognizing the segment of one that each person is. 

Ultimately we created a new profession – the profession of Health Assistant and the internal mechanisms to support that profession.  The Health Assistant has to be an expert problem solver, a relationship builder and to be conversant in the language of medicine, finance, social work and insurance benefits.  He or she has to be team oriented in order to pull in their expert colleagues, whether nurses, doctors, psychologists, pharmacists, social workers, insurance experts or even attorneys when needed for a particular issue.  The communication links and the information have to be at each Health Assistant’s fingertips in real time in order to keep it simple, real and humanistic.  It can’t be scripted or too rote but it must be performed with a certain rigor that is behavioral and scientifically based and consistent across health assistants.  It must follow process but not be a slave to process. 

We started out with the belief that this service would not only help and delight people, but it would save money in aggregate.  Taking the fear out of so many decisions that drive people to ask for unnecessary tests and services and helping influence people towards the right care seemed to us to have the potential to save money while doing the right thing for those in need.  We proved that to be true as well.  Time and again, when we studied populations with pilot populations versus control populations, keeping everything else the same, savings were documented that exceeded even our initial hopes.  There were even indications of improved quality of care from decreased readmissions, increased medication compliance and increased use of preventive care.  At one point, one of our esteemed Board of Directors said, “You guys have discovered penicillin!” 

Those types of results do bring growth.  Accolade is now a company of over 700 people with three offices around the country and continues to grow.  A new CEO has been named and a new team is being put in place to bring Accolade to the next level of growth.  As such, I am taking my leave but remaining as a shareholder, an advisor and a supporter. 

So I move on to my next chapter.  I remain a strong believer in the ability of health plans, physicians, nurses, health systems and all components of health care to better organize in order to create more support and simplicity for both the patient, the family and the dedicated physicians, nurses and other health professionals who serve them.  I will continue to focus my career on finding solutions that achieve lower costs and better access while removing administrative and other barriers for both patient and health professional.  I have always done so with the strong belief that each person is unique and must be treated as such and have found that with respect for all involved the best results can be realized.  I will now leave the growth of Accolade to others, knowing that the foundation is strong and the principles, processes and systems we implemented and tested have been proven to be effective and look for my next opportunity to change health care for the better.  

What Does the Patient/Consumer/Beneficiary/Person (pick your word) Care about when Accessing Care?

A new survey commissioned by Accolade (I am Chief Medical Officer and a founder of Accolade) performed by Harris Interactive (the Harris Poll people) attempts to answer that question.  From a medical vantage point, it may seem like a simple, obvious question. The person accessing care wants to get better!  However, the answer is much more complex.  People, when ill, tend to worry about more than those aches, pains and other symptoms. 

The title asks one question but implies a second question.  What does the person care about is the first.  The second is whether the person accessing care is a “patient” a “consumer,” a “beneficiary,” or some combination of all of those?  While physicians and nurses clearly prefer to see those in need as patients, the most used and perhaps overused term in the health industry these days is consumer.  This often appears to be aspirational as programs and companies are formed to try and find the magic formula with which to induce patients to purchase health case as if it were any other consumer item.  I question whether the emotional nature of illness, and the impact created by the potential for catastrophe inherent in medical issues will ever allow the patient to truly be a consumer.  “Consumers” traditionally are focused on cost and feature comparisons such as deciding whether to get leather seats in a new car.  I don’t believe that when you or someone you love is ill, you ever are a true consumer as implied by that example.  However, at the same time patients are rarely if ever only worried about the cure which use of the term patient may imply.  They are worried about their family, their finances and how their illness will affect all aspects of their life.   People, therefore must be helped to understand the value potential in each health service and see clearly how those services relate to their life issues.  That may fit into the term “consumer” even more than it does into the term “patient.”

I date myself a bit by using the term “beneficiary” as this is the traditional way insurance companies have described those who enroll in their health plans.  I rarely hear that term used in today’s world.  “Consumer” has replaced “beneficiary” except in legal documents.  People “benefit” from the access to care and the financial security that health insurance and health plans offer hence the term beneficiary.  Fundamentally beneficiary communicates the ability to gain access to care and to guard against financial catastrophe rather than reflect the care itself or guard against medical catastrophe. 

I admit to struggling with the right word to use as I jump between the different but co-dependent worlds of health care delivery, health benefits, and the business of health.  For the person in need, the distinction between these worlds means very little and actually just reflects some of the challenges of obtaining needed care in today’s world.  This is reflected in this survey.  It asks questions that approach the issues with the knowledge that each respondent is a complex person with multiple concerns that overlap into all these areas. 

The Accolade Consumer Healthcare Experience Index Poll surveyed 2.046 adults over the age of 18 of whom 1,536 have health insurance through their employer, private insurance or Medicare.  What was clear from the poll is that the experience of accessing care is seen as a daunting task for those in need.  While they trust their physician for health information with 74% saying that they prefer to get information from their physician, they are frustrated by a lack of coordination and challenged by the benefits rules and the costs.  Overall, 53% stated that the hassle of “understanding what care will cost me” and “coordinating all aspects of care” was the major problem that they faced when ill.  It is interesting how strong the fear of these issues is, even perhaps surpassing the simple question of getting accurate diagnosis and treatment. 

67% of those surveyed said that they wanted their health care providers to understand their life circumstances more in order to address their illnesses in a better way.  People understand, perhaps even more than many health professionals that coping with an illness while coping with all the challenges of everyday life are intertwined.  The idea of a physician treating a disease without good knowledge of their other needs and responsibilities whether they are related to work, family or finance is a source of frustration.  80% told the surveyors that they would want a single person to trust to be with them and help them navigate the systems and navigate the challenges of their lives when they require care and they appear to recognize that person is not likely to be their physician.  These numbers reflect a widespread concern with the impact the disease has on a person’s life and family and not only a concern with the biology of the illness.

 

Much of this comports with ideas a group of us had some nine years ago when we, led by Tom Spann as founding CEO started dreaming of a better way to help people through the health care system and the health benefits system.  We had to rethink the consumer and the patient and the beneficiary and think about how to create not just a company, but a new profession, that of Health Assistant, supported by the right information technology and the right management systems.  The Health Assistant has to be part insurance expert, part social worker, part financial advisor, part coordinator, part health educator and most importantly a trusted friend.  While training and experience is needed, equally important are the management processes, the right content that is always kept up to date on the technology platform, the right pay structures and metrics for the Health Assistants, and a sense of purpose and responsibility towards those being helped.   The technology has to support and drive all of those functions while avoiding the trend to become a checklist that harms the human interaction that is core to the function.  We have done that.  We have proved that we can help people in a very positive way and help the health care system as well with our approach. Data from this poll only confirms our initial dream and makes us want to work even harder to continuously improve our systems, training and approach in order to bring this type of support to everyone.  

The Place of Passion in the Business of Health Care

I learned early in my business career, after being in medical practice that the way business people and medical people communicate is very different.  Besides having fundamentally different languages, clinical people tend to be more emotional in their approach to communication than people in the business world.  Sometimes clinicians can get a bit too emotional as they take the passion and concern that is needed when helping a sick patient into the business meeting.  On the opposite end of the spectrum are business people who are often in health care due to their profound desire to help others.  They can bring a hard-nosed focus on budget and margin and sometimes appear to be uncaring of the human impact of those numbers despite their commitment to helping.  Both sides have to understand and accommodate the emotional communication style of the other if our current health care world in which business, management and care are all intermingled has any hope to achieve higher quality and lower costs.   

  

Physicians and nurses know that passion is helpful when speaking with patients.  The patients and their families want to know you care, and that you share their sadness, their anger and their fear as they enter evaluation and therapy for problems large and small.  At the same time, the patient wants to feel that the health professional caring for them is the rock they can lean on and not be overly emotional.  The gifted doctor communicates emotions without inflaming them and is able to walk the difficult line of sharing sadness and happiness while also appearing objective and professional.

 

In the board room and in business meetings, physician often feel the need to communicate the emotions of the patients to the managers in order to underline the importance of the business decisions on patients’ lives.  In this way, physicians often feel when working with business people and managers that they must play the role of emotional middle-men (and women) communicating the patient feelings and reactions to the business professionals. 

In the business world however, the emotional speaker may be discounted and de-emphasized in the internal negotiating that often reflects productive business decision-making.  That emotionality may be thought of as reflective of less than fully rational deliberations and the one displaying the emotion may therefore be less credible than the one who can make a “business case” in a totally dispassionate way.  There is often a belief in business and management that rational analysis is inherently devoid of emotions. 

In the past few years, research on decision making and emotions have led to what Jennifer Lerner, one of the leading lights in this field (Prof Lerner is an advisor to Accolade), calls a “revolution” with the “potential to create a paradigm shift in decision theories.”  In an article published in the Annual Review of Psychology, she and her colleagues write, “emotions constitute potent, pervasive, predictable, sometimes harmful and sometimes beneficial drivers of decision making.”  While anger and fear tend to be thought of as impairing good decisions, even these types of emotions in the right situations can be useful.  In the preface to his book, “Feeling Smart,” Eyal Winter cites a study that shows when we are moderately angry our ability to distinguish between relevant and irrelevant claims in disputed issues is sharpened. 

At Accolade, in our early formative years, I sometimes took on the role of playing a difficult person calling Accolade with medical problems as part of our certification of new personnel.  During one of these certification calls, I played an unpleasant person, who was angry at everything.  The person I was testing, a talented business health professional was accurate, dispassionate and correct in everything he was saying.  In my role as the patient with the problems, his professional attitude made my character more angry as it made me feel as though he did not understand the urgency of my need.  I stopped my role playing and admonished him to stop being so damn professional!  He had to show emotions and allow himself to be more human to me as the angry person in order to build my trust and allow for positive influence.  At the same time he could not reflect my anger to the point of inflaming an already difficult situation.  He had to understand, acknowledge and direct both his and my (in my actor role) emotions in such a way as to create better paths towards high value solutions.  These same observations hold true for discussions within organizations as well as discussions with patients and other stakeholders. 

The issue of how we reconcile the differences in emotional communication between clinical health professionals and managerial health professionals in order to develop systems that are optimal for patients is critical.  We must, when designing health delivery and care management systems, build them in ways that encourage the understanding of emotions in order to foster better decision making by all involved.  Unless the people on both the clinical and managerial sides of health care can come together and communicate well, the chance of developing better ways to build  structures and processes that encourage doctors, nurses, patients and families to work together for maximum effectiveness and efficiency is significantly hampered. 

In health care especially, the decisions that doctors, patients and families must make when someone is sick are perhaps more fraught with emotions than almost any other decisions.  Our management systems must reflect, acknowledge, and proactively address this reality.  These realities must be understood and used in the same way that objective data, both quantitative and qualitative is understood and used.  Failure to do so, whether in care management decisions or business decisions will result in poor results for the patient and the organization. 

At Accolade, we take an approach which involves acknowledging the emotions, understanding them and then either attempting to encourage them, minimize their impact, or direct them in a more useful way.  Internally, as a company combining smart people from the clinical and business worlds, we constantly work to understand the different emotional communication styles that all of our dedicated professionals bring to the table.  In the same vein, for care delivery systems, equal focus on the providers’ emotions while working with patients is also critical.  As Winter says, “our emotions are more rational than we think” and in health care, we must bring the same rigor to their evaluation, study and to the impact they make on medical decisions as we do for staging and treatment of cancers and other diseases.  We are human.  Emotions are part of the human condition.  Let’s stop making believe they are not important or not relevant to care and to good management and address them constructively.

The Cost of Care When Nothing is Wrong

For many years, healthcare management has focused on the small percentage of people who drive very high costs.   I admit that I have never been comfortable with that formulation.  I could never get past the reality that people who are spending the most money in health care are really sick.  They are having surgeries and being hospitalized – taking very expensive biological agents and chemotherapy, and have diseases such as cancer and sepsis, strokes and myocardial infarctions.  They are the exact people who should have the most money spent on them.  While focusing only on that small percentage of people who are the sickest is perhaps administratively less costly and helpful to those individuals, as it gives those people the coordination they require which does save some money, it targets those with the lowest percentage of unnecessary care.  It ignores the much larger number of patients, with the larger percentage of unnecessary care, representing the bulk of those who seek care.

In my years of professional practice in the field of gastroenterology, more than half of my patients had pain and symptoms with no disease that could be found by testing.  They were people with belly pain, constipation, and diarrhea who were suffering, but had normal blood tests, normal x-rays and normal endoscopes.  They often spent large amounts of health care dollars as they bounced around the medical system, getting repeat tests, going on more visits to different specialists,and trying to find ways to cure their ills.  I was fairly successful treating those people because I understood, in the words of Francis Peabody spoken in 1925, that “The secret of the care of the patient is caring for the patient.”  I would see these types of people, talk to them about the issues in their lives that were causing them distress, and often instruct them to drink more water (I became famous for my water cure.)  Most importantly, I would tell them to come back and tell me how that worked because I was interested in how they felt. I asked them about their life and how their pain was affecting their work, family and finance.  Being attuned to the life context of patients has now been shown in controlled studies to have tremendous impact on the quality and cost of care by Saul Weiner and Alan Schwartz. Only rarely did I end up referring them to psychiatrists or psychologists, as I knew that the minute they perceived that I was telling them that there was nothing physically wrong, that it was “all psychological,” was the minute I would lose their trust.  I took these lessons with me as I entered the world of health policy and care management.  

In my health policy career, I studied populations and reviewed data and learned that while these types of patients may have been over 50% of my practice, they were an even larger percentage of primary care practices. Much of primary care is actually the art of following Voltaire’s dictum that “the role of the physician is to entertain the patient while nature cures the disease.” That is to say: finding ways to help people for whom there are no answers by lab and imaging and whose problems will abate over time. From a population health point of view, these people do not fit neatly into the high cost cohorts that we try to target.  Yet, these are people in pain and distress coming to the doctor to relieve that pain.  Sometimes they are people with chronic diseases however often their immediate pain is not related to their battles to manage their diabetes or heart disease.  They are in the health care system, spending money as a measure of hope, and a significant percentage of those dollars spent are unnecessary.  That gets to the heart of the best way to save money in health care….focusing on the unnecessary care that is often directed towards those who are the most difficult to treat and manage, because their problems do not fit neatly into the boxes that we in medicine want to create.  

A recent review in the Harvard Review of Psychiatry provocatively entitled, “Medically Unexplained Symptoms: Barriers to Effective Treatment When Nothing Is the Matter” By Lipsitt, Joseph, Meyer and Notman discusses the problem and suggests principles around how best to treat such patients. It starts out by describing a composite model patient who has belly pain and is afraid of having ovarian cancer, as her aunt had recently died of ovarian cancer.  The authors describe a cycle of having evaluation after evaluation with nothing found, and the physician referring her to psychiatric care.  As they state, “She feels misunderstood, rejected, disappointed, and angry.  She decides to find another doctor.  The cycle repeats for several months.”  They point out in the article, “These patients pose a significant burden to practicing physicians and the health care system, with estimates of nine times the cost of general medical care per patient.”  

The article suggests that the way to treat these people is to make the relationship paramount, and to focus on care versus cure.  This approach creates a clear path for health policy and care management in which the ability to build trust with these types of people is critical to accomplishing lower costs and higher quality for the population, as these are the patients who  make up the majority of all physician visits, and have the highest percentage of unnecessary care .  It is not as low cost administratively as focusing on small numbers of expensive patients; however it is a more effective way towards effective cost reduction and quality improvement.  

The model of care management we have built at Accolade allows these people to build a trusting relationship with Health Assistants who care for them as people while we allow the physicians and nurses who are evaluating and treating them to find the cures. The small number of people who become high cost patients are parenthetically better managed because they have formed trust with an assistant before the coordination they require is necessary.  It is an approach that assumes physicians practicing good medicine and assumes rational but emotional patients who need a trusted, caring person to be on the healthcare journey with them.  It follows Peabody’s dictum while achieving lower costs, as it is about caring rather than curing, regardless of the disease label, or lack of a disease label.  While such an approach may modestly increase administrative costs, it dramatically lowers total costs by addressing unnecessary care. Simply put, relationships are cheaper than tests and hospitalizations, and eliminating unnecessary costs by cultivating purposeful relationships will bring us closer to our health care goals.    

Physicians on the Assembly Line

The role of the physician in our evolving medical system is the subject of many studies, articles and angst on the part of the physician community.   In an article this week in the New York Times, about the efforts by a group of physicians in Oregon to unionize, the physicians involved discuss how their creative assessment and problem solving skills are brought to bear in even the most mundane cases.  Dr. Rajeev Alexander, one of the physicians involved is quoted as saying, “Real life is all about the narrative.  It’s sitting down and talking about bowel movements with a 79 year old woman for 45 minutes.  It’s not that interesting but that’s where it happens.”  Dr. Alexander may start out believing the source of this elderly woman’s constipation is related to dehydration, often the most common cause when elderly people have to be brought to the hospital due to bowel problems, however he is following the best medical approach by spending time to first determine that the problem is not something less common, and then trying to also determine factors that may contribute to the dehydration.  He brings a cognitive approach rather than a strictly reflexive approach.  However his approach from a pure resource management point of view may not be seen as efficient, hence the disagreements that led to the physician group forming a union. 

The system clearly needs to be more efficient.  We must be both customized and thoughtful for each patient, and also recognize that much of medicine is the same from patient to patient.  We must build more efficiency into the system.  Is the best way to do this by taking the traditional leadership role of physicians in patient care and making them into unionized workers?  In that same article, Dr. Brittany Ellison, another member of the physician group says, “We’re trained to be leaders but they treat us like assembly line workers.  You need that time with the patient where his wife is ratting on him.”  Is the best way to accomplish this by making the role of the physician be more of a follower – of algorithms, of management incentives, and of organizational goals, than a leader for their individual patient?  Should they be judged on population effect, efficiency and data capture rather than their work of caring for the individual?

While I have an MBA from Northwestern University and twenty-five years of experience working on the business side of the health care industry, I do not believe the answer lies in money, bonus programs or physician incentives.  I have found, that while physicians are people and want to make money and earn incentives, they are driven more by their own sense of commitment to their patients and their own sense of professionalism.  Dr. Robert Wachter, chief of the division of family medicine at the University of California, San Francisco in that same article states, “If at the end of the year, 10 percent of your salary is at risk based on whether you have consistently clean hands, what patients say about you, readmission rates, that can be OK. The counterargument is that you could screw things up by tying everything to financial incentives.  You stomp on their intrinsic motivation.”

Appealing to that intrinsic motivation is critical for the individual patient interactions that make up that data.  The goal when I or the professionals who work with me at Accolade, help people through the health care system is to find ways to bring out the best in people by finding ways to use the internal motivation of both doctor and patient.  We help people find the right clinicians for the problems they have and help them communicate with their doctors, nurses, and other health professionals in such a way so as to bring out the best in their clinician. 

Maybe we have to rethink the role of the doctor.  Perhaps we need to reserve the use of the doctor as a true leader and always team them with another professional who can spend more time filling in the blanks for them.  We have experiments going on around the country which are as varied as having nurse practitioners be the front lines for most patient interactions, to having scribes be with doctors to free them from the data capture duties that they have.  At Accolade we have pioneered a new profession of Health Assistant to assist patient and doctor with the life context issues, emotions and clinical decisions that patients must make (which specialty to see for my problem, what questions should I ask the doctor, how can I balance my life responsibilities with my compliance needs).  A Health Assistant who is part of a team led by a creative problem-solving physician could make the physician more efficient and allow for more access to the system.   Whatever the solutions that are developed, it should not be to make the physician into an assembly line worker.  

“Strangers at the Bedside” and the Internet Economy

In my last post, I wrote about information systems and health care and the challenge of finding and treating the “black swans” which often separates superior medical care from  barely adequate or even bad medical care.  I define barely adequate care as care that inadvertently takes advantage of the body’s tendency to heal itself and represents a doctor and /or nurse being more lucky than smart.  The movement from medicine being an art, a science and a profession to also being a business is today tied to an economy which is rapidly changing as the Internet economy becomes a major factor in our lives and therefore in health care. 

But first, I must pursue some personal history.  In my education and development both as a physician and as a healthcare systems expert, certain books were formative, having a dramatic impact on my thinking.  One such book was “Strangers at the Bedside” by David J. Rothman.  Professor Rothman is a historian by training however he holds the post of the Bernard Schoenberg Professor of Social Medicine and Director of the Center for the Study of Society and Medicine at Columbia University.  To make this personal story more complex, Bernard Schoenberg for whom Professor Rothman’s academic post is named, was a professor of mine at Columbia when I was in medical school and was someone who taught me to look at the social and emotional context that each patient brought with them to the doctor-patient encounter. 

In his book, David Rothman describes the changing dynamic in social and ethical issues in medicine, especially in those issues involving clinical research, end-of-life, and other bioethical dilemmas such as choosing patients for transplants with limited access to donor organs.  He discusses the arrival of sociologists, ethicists, theologians and others trained in the humanities into these decisions that previously were the purview of only the treating physician.  In a future post I plan to write more about David Rothman’s words now twenty-five years after he wrote them.  He does not write about the business people, the management experts and the information technology engineers and their entry into the bedside dynamic yet those may be the more important “strangers at the bedside” in today’s world.

As medicine, health care delivery systems, and health information technology progress, the industry must be informed by more than medical facts and prospective.  Thomas Friedman’s 1999 book entitled “The Lexus and the Olive Tree” in which he describes the drivers behind globalization has nothing to do with health care.  In that book, which came only eight years after David Rothman’s book, Friedman talks of a changing world and speaks about the democratization effect that globalization could have on technology, finance and information.  I remember reading his book when it was first published and believing, somewhat naively perhaps, that he had left out the democratization of health care in his formulation.  I believed that through the internet and through the free movement of health and medical information, health care which is far too important to be left only to doctors, as David Rothman points out so elegantly, was going to undergo a revolution for the better by making the mystery of medicine – the guild aspect of the medical profession – fall to the wayside of an informed, democratized public. 

I was too optimistic.  I minimized the profound complexity of medical care and the fact that people, for the most part, access medical care only episodically and focus on their life issues before focusing on their health issues.  I left out the spiritual dimension of care that is a necessary part of medicine and has been written about so eloquently by people such as Daniel Sulmasy, who wrote another of my formative books, “The Healer’s Calling.”

I also missed the nature of an Internet economy and the tendency towards monopoly that often defines the best Internet companies.  A recent article in The New Yorker by Om Malik entitled, “In Silicon Valley Now, It’s Almost Always Winner Takes All” cogently presented the reasons for this monopolistic tendency to prevail in this “democratized” world.  As Malik writes, “In the course of nearly two decades closely following (and writing about) Silicon Valley, I have seen products and markets go through three distinct phases.  The first is when there is a new idea, product, service, or technology dreamed up by a clever person or group of people.  For a brief while, that idea becomes popular, which leads to the emergence of dozens of imitators, funded in part by the venture community.  Most of those companies die.  When the dust settles, there are one or two or three players left standing.  Rarely do you end up with true competition.” 

Malik writes about the Network effect, often called Metcalfe’s Law after Bob Metcalfe inventor of The Ethernet, which occurs when the value of a product or service goes up with the number of people using it.  It creates a loop of algorithms, infrastructure, money and data and that leads to a winner-take-all approach.  This is especially recognized by the investors who provide the capital for these new companies.  The investor community and the public markets take large risks to predict the next monopolies and in this Internet economy, punish anything less than a monopoly or a duopoly since according to Malik’s cogent analysis, most of those companies die. 

What happens when this winner-take-all type of economy meets health care?  In some ways we have a direct example with Epic Systems which now supplies the hospital software that holds 54% of the US population’s health records.  It is a marvelous system designed by engineers and hospital administrators and is masterful at capturing data for billing purposes and for inventory purposes.  Physicians will tell you it can divert their focus from the patients and while it does make accessing records when not at the bedside easier, it does not tell the patient’s story – their life context and emotional struggles with illness that are critical to good care, in the way it must.  Competition is being shut out because, as Metcalfe’s Law suggests, the more EPIC is the standard and the more data they have, the more monopolistic they can become.  There is an old joke told in the early days of computing (and I am old enough to remember).  It goes, “How many Microsoft engineers does it take to change a light bulb?”  The answer – “None because Bill Gates declared that darkness is the standard.”  Will we define a health care standard that removes the human aspects from care even though those elements are arguably the most important?

Perhaps a good example that is not in health care and not even in the Internet is the story of agribusiness in the United States.  In the food business, four companies control over 60% of grain production.  This came about from a starting point of an America whose food came almost entirely from family farms.  It occurred because the Internet realities of algorithms, infrastructure, money and data have their counterpoints in food production, in land, infrastructure, money and logistics.  The more you control land, infrastructure and logistics, the more money you can raise and the more you can increase control of the market. On the positive side, this has led to more efficient use of farmland, more availability of food to the market on a year round basis, and more consistency in preventing food borne illness.  On the negative side, we have been subject to monopolistic tendencies by these companies, leading to episodic need for lawsuits and regulatory action, a loss of family farms and the communities they supported, and a loss of the unique aspects of local food that can lead to healthier more varied diets.  We have traded efficiency and the positive of availability for a loss of flavor (for those of us who value that), loss of varied nutritional sources, and perhaps potential environmental damage as well (I will let those discussions occur elsewhere).  Management and finance prioritized over dedication and even love of the land and the amazing variety of food the land produces have driven this tendency. 

I now watch the froth of Internet health companies being pursued and funded by venture capitalists and the hope being put into information technology in health care by both government and investors.  I welcome the creativity and the new approaches but wish those to be driven by a desire to improve the care for each unique patient as well as the desire to foster efficiency.  I for one remain enamored of a democratization of health care and repeat a line I wrote earlier in this post and have been saying for years, that health care is too important to be left to doctors and nurses.  However, health care is also too important to leave out doctors and nurses.  It is too important to leave health care only to the management experts and the information system engineers.  Health professionals train and take oaths and have experience that gives them a special voice in protecting the personal aspects of medical care. 

David Rothman states that while “the physicians are alert to numbers and findings from random clinical trials carry critical authority” they also recognize that no two patients are alike and that medicine is inherently uncertain.  Clinicians value experience highly as they realize that only through experience do professionals understand the management of that inherent uncertainty and how individuals can vary from the clinical trials.   Experienced clinicians understand, as I discussed in my last blog, the importance of always looking for the unexpected.  We as patients – and we are all patients at one point or another – should also value that knowledge and experience and always hope to have doctors and nurses, who use technology and who respect our ability to find information for ourselves on the Internet and from other sources.  We should also demand that the technology support health professionals treating us all as the potential “black swan” – the unexpected disease or circumstance and not as a data point in an Internet algorithm or on a balance sheet.  I believe that can only occur if experienced caring clinicians are involved in the development of this new world of the health care Internet economy and ironically do not end up as the new strangers at the bedside.

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.