Medical Care, Sick Care, Health Care....Who Cares?!

At the risk of sounding cynical or just plain difficult, I have to say that I am tired and bored by articles and books that tell us that we have a medical care system or a sick care system and not a health care system.  Dr. Steven Schimpff is one of the great thinkers in medicine and I apologize beforehand that his post on Medical Megatrends and the Future of Medicine is the initiating factor in this rant.  Dr. Schimpff outlines all the reasons that we have to focus more on prevention and also more on coordination of care and I agree with all of his points.  His argument cogently shares the statistics on causes of death which show that the preponderance of disease is due to lifestyle choices.  He nicely puts together what is said in many articles, blog postings, television medical shows, newspapers and everywhere else that we are killing ourselves by smoking, alcohol, drugs, poor eating habits, driving dangerously  and lack of exercise.    This all leads to the idea that we must foster a healthier lifestyle.  I get it and I suspect that by now if you don’t get it, you must be living in a cave somewhere (although if you are I suspect you are eating healthier and getting more exercise). 

However, taking medicine and our health care system to task for not fostering an emphasis on prevention is misguided.  Dr. Schimpff alludes to this in one of his historical points about the war against infectious diseases.  The tide in that war was turned before the advent of antibiotics by proper sanitation, hygiene and water systems, not by a health care system.  Many years ago I taught a course in preventive medicine to second year medical students.  I would always start the class by asking them who the most important professional was for preventive health.  They all said the primary care physician.  I told them my answer was the professional garbage collector as the collection of garbage prevented more illness than any primary care physician.  We have a societal and cultural problem that will only be addressed with societal and cultural answers not with medicines and with our health care system.  In other words:

                Our medical or health system (I don’t really care what you call it) should not be charged with changing our culture.

Those who change our society and our culture to foster a healthier lifestyle will likely be in disciplines other than medicine.  That battle will be led by those who put bike paths throughout our cities and countryside.  They will be employers who provide eating areas for their employees with healthy good tasting food.  They will be people like my son who worked on an organic farm and then wrote about his experience and another son who is dramatically changing the way people get their food by starting a company, Good Eggs, to foster a more direct farm to table eating experience (I can’t help it…I am proud of my children). 

                If you successfully create a healthy culture, people will still get sick and even die

Life really is a fatal illness and not all disease is “your own fault” as may be implied by the current emphasis on changing our health care system to focus more on prevention.  Dr. Schempff wisely calls for better coordination of care for those with chronic illness and this must be supported with new approaches being developed such as the approach at Accolade.  However all patients, not only those with chronic illness need that level of coordination in this era of fragmented confusing care.  I am not upset by our emphasis on healing the sick and on finding diagnoses and cures.  If I am sick then I want my doctor and other health professionals to focus on getting me well, not on blaming me for the lifestyle choices that led me to illness. 

So I am dedicated to changing our culture and society to be healthier and in the meantime, I am even more dedicated to finding ways to better treat people and families who are sick and in need.  At all times, the charge of all health professionals should be to see each person we treat as a loved family member and help them with energy, intellect and empathy no matter what choices led them to us.  

Defining a Doctor’s Role

What is the future of medical practice and of clinical care?  What is the future role of doctors?  There is an old joke about the airplane cockpit of the future.  It goes that the flight crew manning that cockpit will consist of a pilot and a dog.  The pilot’s job will be to feed the dog.  The dog’s job will be to bite the pilot if he tries to touch anything. 

In the same vein, this linked blog by Dr. Davis Liu reports the observations of a primary care doctor who attended the   HealthInnovation Summit hosted by Rock Health in San Francisco.  In a report that seems sometimes like that of an alien being plucked down in the middle of a football game, trying to understand the culture and values of earth,  this intelligent physician seems to be both a bit confused and also enlightened by what he heard.  For me, the comments by the keynote speaker that he reports on reflect the changing definitions of medical care and the changing role of the physician. 

That keynote speaker was Vinod Khosla, co-founder of Sun Microsystems.  He is quoted in this blog as saying: “Health care is like witchcraft and just based on tradition” and that technology had to stop doctors from practicing like “voodoo doctors” and be more like scientists.   It sounds to me like someone needs to add a dog and a doctor to this vision of technology's role in the health care office of the future.

Mr. Khosla went on to say, according to Dr. Liu, that the “machines”  should do “80%” of what doctors currently do and that the machines should be developed by people who are not in health care as the knowledge of health care is a disadvantage in developing these new technologies.  I have actually heard this argument from many entrepreneurs in the past.  The argument that being steeped in a discipline, while giving one in depth knowledge, also give one certain paradigms  which impede the ability to think creatively about problems.  And in some ways I have come to agree with the argument as having a set of fresh eyes working with experts often can be the proper shock to challenge the “petrified opinions” that Mark Twain talks about that invariably develop as part of professionalism.  (Twain’s full quote is “Loyalty to petrified opinion never broke a chain or freed a human soul.”)

But the central core of Mr. Khosla’s argument may fundamentally misunderstand the role of the physician.  Or it may be that I am romanticizing the role of the physician in a way that reflects a world that no longer exists.    If the definition of a doctor’s role in medical care is to diagnose and prescribe treatment for illness based only on the pathophysiology of the disease, then I agree that 80% of that can be done by a machine.  Perhaps more!  If a doctor’s role is to understand the person who has the disease, as William Osler said (“It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.”) then I question whether a technology can sort through the personal beliefs, the feelings, the social aspects, the finances, and the spiritual beliefs that go into any medical decision, however big or small.  Even if that is possible, I doubt it possible for a technology to form a “human” relationship akin to the strong person/health professional relationship that can help in overcoming the barriers that we all have due to our own personal characteristics and situations that impact our own ability to swim through the rapid currents of health care. 

But doctors are now being trained to be more scientific.  They are paid by a system that encourages them to practice strictly according to “evidence” which means scientific evidence based on pathophysiology alone and are also paid to spend precious little time actually listening to people and learning who they are as people all in the name of efficiency and science. 

Without that perhaps “soft” role of physicians, then I find myself agreeing with Mr. Khosla.  Perhaps it is time to just accept that physicians are no more than diagnosis and treatment machines and that they are no longer the confidantes, supporters, and even at times friends that the profession used to be.  Perhaps this priestly function of medicine is gone. 

While that may be the case, let us not forget that good care requires that we understand people with all their irrationality and with all of their own reasons for following or not following “science”. 

Perhaps in the area of science that involves technology, Mr. Khosla is right in assuming that good entrepreneurs and good programmers are the answer even perhaps the complete answer.  In the areas of science that involve human behavior (and medicine is more about human behavior than it is about the pathophysiology of disease) the answers are not often found in binary code or proper investments.  The answer may be a new professional.  The answer may be to relegate physicians to being diagnosticians and prescribers of therapy rather than to be the Doctor that I grew up aspiring to be.  Or the answer may include changing incentives and standards to include that human role for physicians. 

I don’t know the right answer.  I only know that Mr. Khosla’s vision is an important one but it is fundamentally wrong if it ignores the human aspects of caring, listening, understanding and human problem-solving that is so necessary in medicine.

Life, Death and Decisions

We at Accolade help people make decisions.  We do not make decisions for them and we do not judge the quality of their decisions, rather we help them put voice to their own values, their own beliefs and help them understand their options as they enter and travel through the maze that is health care.  When one reads the scholarly articles about “decision analysis” (and there is an entire body of study, even an organization and journal dedicated to the science of medical decision making) there are critical truths that Accolade Health Assistants deal with every day that are only rarely addressed in the scholarly literature. 

In a wonderful article in the New England Journal of Medicine, entitled, “There is More to Life than Death”, the husband wife team of Jerry Groopman and Pamela Hartzband point out that while the emperor may have clothes those clothes are rather tattered rather than being the sweeping robes of royalty.  They point out the central focus in decision research is on death as the main, and often only factor to be considered while the truth is that people are complex beings who make decisions that are based on factors in which the risk of death is but one of many.  How will my decision affect my family, my ability to work, my ability to be independent, my need for money, my relationship with God if I am religious?  These are just some of the factors that go into every decision that involves the state of one’s own body and well-being. 

Groopman and Hartzband further point out that while decision support may encourage decisions be made before the issue is possibly present, hence the push towards advance directives and the public discussions of PSA screening and mammography testing, it is virtually impossible to anticipate how one will look at a situation until one is in that situation.  They state: “”But these calculations are flawed.  They require people to imagine themselves in a health state that they haven’t experienced.”  This brings to mind a quote from Freud who said, “We cannot, indeed, imagine our own death; whenever we try to do so we find that we survive ourselves as spectators.”  Freud’s statement is not only true for death but also holds true for all health issues.  We cannot really imagine our own illness and our own individual decisions that we have to make when moving through the progressive nature (progressing towards resolution, chronicity or death) of any illness.  Hartzband and Groopman point out that this is due to what cognitive psychologists call “focusing illusion”.  That is the illusion that occurs when one tries to anticipate the global impact of any future change especially a health change.  People tend to focus on one aspect of the change and disproportionately weigh its effect on their lives.   Thus their decision when nothing is really at stake is different than when they are actually in the situation. 

This type of “focusing illusion” occurs in a sense with medical decision researchers.   The fact that they put numbers against these often faulty assumptions based on their own focusing illusions make their conclusions appear to be precise when in reality that is false precision.  They tend to focus on death as an outcome and also tend to put their own values and their own numbers, on quality of life, rather than take the much more difficult step, and the step that may be virtually impossible to quantify, of trying to understand the individual process of decisions making based on the global impact to different people with different beliefs, values, family issues, economic issues, and psychological issues. 

At Accolade, we help each individual with their own decisions as they work through their personal health decisions, best done with their doctors, at the time they need to make those decisions.  We use those numbers that our brilliant colleagues in medical decision research develop but help people understand their limitations and the assumptions that lie beneath the surface of the numbers.  We focus on their values, their needs and their family support as they go through their decision making process. 

Drs. Groopman and Hartzband end their article with the following paragraph which sums out the issue quite well so I will also end this commentary with their words.

“Basing decision on the outcome of death ignores vital dimensions of life that are not easily quantified.  There are real complexities and uncertainties that we all, patients and physicians alike, confront in weighing risk and benefit.  Wrestling with these uncertainties requires nuanced and individualized judgment.  It is neither ignorant nor irrational to question the wisdom of expert recommendations that are sweeping and generic.  There is more to life than death.”

Screening Dilemmas

A recent blog by Melinda Beck in the Wall Street Journal discusses the issue of whether there is "Too Much Breast Cancer Treatment?".  The blog is partially based on a study from the Annals of Internal Medicine in April , about the over diagnosis of breast cancer.  It brings up a difficult problem for all of medicine and for all health professionals.  What do you do if there is population data that suggests, as that article does, that many people who undergo treatment are not going to benefit and may actually suffer due to the risk and side effects of the treatment, yet for any specific individual, it is virtually impossible to tell who fits into the group of those people who truly need and benefit from the treatment versus who is in the group who will not benefit from the treatment?  And how do you truly understand the choice involved when the risk of not treating is catastrophic? 

In some ways, we are talking about the basics of screening tests.  A good screening test tends to be highly sensitive.  Unfortunately, this can mean, and often does mean that is it not very specific.  In other words, it is designed to have very few false negatives even at the risk of having a lot of false positives so this article on screening for Breast Cancer may be accused of belaboring the obvious (although it tends to not be obvious to many in the population and in our legislative bodies who think you can always have high sensitivity and high specificity in screening tests).  We often tend to make a societal decision to avoid the risk of individual catastrophe by putting up with the higher costs and the relative risks of pursuing all of those false positives with more tests and treatments that have their own risks.  In the past year, the debate over the recommendation on the age of initiating mammography for breast cancer screening has remained in the public awareness as that societal decision on the avoidance of risk was made differently by the US Preventive Services Task Force which recommended starting screening at age 50 while the American Cancer Society suggested remaining at a screening start age of 40. 

The real challenge to health professionals is to inform people without panicking them and without biasing them one way or another.  The judgement of the relative risks and benefits should properly be made by an individual and not by the society as a whole however it should be made with full knowledge.  People need to know that a screening test may leave them with a “positive” result that is ultimately false that leads them down a path that can create other problems.  At the same time, they also have to know that missing early stage disease, such as breast cancer, can make treatment more difficult and less likely to be ultimately successful.  These are not easy messages to give as they are more nuanced than just saying, “have the test” or “don’t have the test”.  Health professionals should be present to help people make their own decisions after they have all the facts and are as calm as possible when they make those decisions not to force their own values or even society's values on those individuals.   

"Patient Engagement is the Blockbuster Drug of the Century"

A blog written by Leonard Kish which is then highlighted in a Forbes blog by David Chase deserves comment.  At Accolade, we have believed and have put into practice just that philosophy that "an engaged patient is the blockbuster drug of the  century."  We take it one step further as none of us ever know when we will make that transition from being a person to a patient.  We have therefore found that part of the challenge is to engage people who are about to become patients, before they take that fateful step or very soon after.  For over 60% of the people we engage and help, we become their trusted assistant before they actually access care.  They engage with their Health Assistant who makes them smarter, calmer, more confident  and better patients and they end up using the health care system in such a way as to get outcomes that are better for themselves and lower costs for the system as a whole.  For us, this "blockbuster drug" has become reality as our people, processes and systems combine to create a new profession  in health care that can focus in a laser like fashion on engagement and decisions support.  The profession of Accolade Health Assistant assists with every decision including those decisions which are financial, logistical, social and insurance driven as well as clinical.  by first engaging and creating a trusted relationship with a trained professional.  It works and our results show that it is proven to be the blockbuster that these authors write about.

The Institute of Medicine Report “Best Care at Lower Cost”

As we listen to the political debates about health care, and the childish accusations of who is lying about what, it is nice to see adults really studying the problem and developing a thoughtful approach to the analysis and to possible solutions. The Institute of Medicine is famous for doing such careful studies and this one is no different.  I spent much of this weekend reading the report itself, as well as the news reports of the study, and came to two major conclusions of my own:

The press reports of the study suggest that most journalists have not actually read it, or if they have they have missed the major conclusion.

The challenges faced by the high costs in medical care require a rethinking of health care in our country and not just a debate over who is going to destroy or save Medicare. 

If you read the media reports about the study, one would think that the purpose was to determine the excess costs of health care in the United States.  That, of course, is at best incomplete, and at worst incorrect as suggested by the title.  The study is an attempt at analysis and solutions, not at just defining the size of the problem.  Thus the study starts with a quote. 

            “Knowing is not enough, we must apply.

            Willing is not enough, we must do.”

-          Goethe

This IOM study is about what we must do to optimize health care for all in this country and not just about the excess costs.  The number of more than $750 billion dollars of waste in the system is what caught the eye of the media however even more interesting is what the authors saw as the source of the excess costs.  That was reflected in this table.

TABLE S-1 Estimated Sources of Excess Costs in Health Care (2009)

Category	Sources	Estimate of Excess Costs
Unnecessary Services	· Overuse—beyond evidence-established levels · Discretionary use beyond benchmarks · Unnecessary choice of higher-cost services	$210 billion
Inefficiently Delivered Services	· Mistakes—errors, preventable complications · Care fragmentation · Unnecessary use of higher-cost providers · Operational inefficiencies at care delivery sites	$130 billion
Excess Administrative Costs	· Insurance paperwork costs beyond benchmarks · Insurers’ administrative inefficiencies · Inefficiencies due to care documentation requirements	$190 billion
Prices That Are Too High	· Service prices beyond competitive benchmarks · Product prices beyond competitive benchmarks	$105 billion
Missed Prevention Opportunities	· Primary prevention · Secondary prevention · Tertiary prevention	$55 billion
Fraud	· All sources—payers, clinicians, patients	$75 billion

                                                                                                Source: IOM 2010

So this is not a simple problem and it is also not a problem for payers that will be solved by a total focus on prevention or a total focus on excess administrative costs.  One must also address unnecessary and inefficient services in order to truly address the health care cost crisis in our country.  With this starting point, the study methodically makes the case for a “continuously learning health care system” with the following characteristics.

TABLE S-2 Characteristics of a Continuously Learning Health Care System

Science and Informatics

·         Real-time access to knowledge—A learning health care system continuously and reliably captures, curates, and delivers the best available evidence to guide, support, tailor, and improve clinical decision making and care safety and quality.

·         Digital capture of the care experience—A learning health care system captures the care experience on digital platforms for real-time generation and application of knowledge for care improvement.

Patient-Clinician Partnerships

·         Engaged, empowered patients—A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.

Incentives

·         Incentives aligned for value—In a learning health care system, incentives are actively aligned to encourage continuous improvement, identify and reduce waste, and reward high-value care.

·         Full transparency—A learning health care system systematically monitors the safety, quality, processes, prices, costs, and outcomes of care, and makes information available for care improvement and informed choices and decision making by clinicians, patients and their families.

Culture

·         Leadership-instilled culture of learning—A learning health care system is stewarded by leadership committed to a culture of teamwork, collaboration, and adaptability in support of continuous learning as a core aim.

·         Supportive system competencies—In a learning health care system, complex care operations and processes are constantly refined through ongoing team training and skill building, systems analysis and information development, and creation of the feedback loops for continuous learning and system improvement.

The report starts and does not end with this definition of the scope of the problem and this vision for a continuously learning health care system.  It then goes on to build recommendations and strategies for achieving these characteristics in order to reach that new health care system model.  The recommendations that they put forth fall into these categories as defined in the report.    

Categories of the Committee’s Recommendations

Foundational Elements

Recommendation 1: The digital infrastructure. Improve the capacity to capture clinical, care delivery process, and financial data for better care, system improvement, and the generation of new knowledge.

Recommendation 2: The data utility. Streamline and revise research regulations to improve care, promote the capture of clinical data, and generate knowledge.

Care Improvement Targets

Recommendation 3: Clinical decision support. Accelerate integration of the best clinical knowledge into care decisions.

Recommendation 4: Patient-centered care. Involve patients and families in decisions regarding health and health care, tailored to fit their preferences.

Recommendation 5: Community links. Promote community-clinical partnerships and services aimed at managing and improving health at the community level.

Recommendation 6: Care continuity. Improve coordination and communication within and across organizations.

Recommendation 7: Optimized operations. Continuously improve health care operations to reduce waste, streamline care delivery, and focus on activities that improve patient health.

Supportive Policy Environment

Recommendation 8: Financial incentives. Structure payment to reward continuous learning and improvement in the provision of best care at lower cost.

Recommendation 9: Performance transparency. Increase transparency on health care system performance.

Recommendation 10: Broad leadership. Expand commitment to the goals of a continuously learning

While I praise these elements, I also know that the strategies suggested in the report will by necessity be incomplete, as many minds in every field will develop new ways of looking at these problems and new solutions.  Often, many of the best tactics and strategies come from the private sector which includes for profit and not-for-profit organizations.  We, at Accolade have found our own solutions to some of these issues and have been able to prove their efficacy at meeting the challenge of “best care at lower cost” that the authors have defined. 

In our case we have focused on the care improvement targets and those foundational elements and policies which support those elements.  We also know that solutions tend to build upon a foundation of other solutions.   Thus, we are just at the beginning of finding new approaches and new technologies to solve our health care dilemmas.  We are only limited by our commitment and our creativity so I remain optimistic about our health care future.   

Unintended Consequences

The article by Paul Gionfriddo entitled "How I Helped Create a Flawed Mental Health System That's Failed Millions -- and My Son" tears at one's heart and points out the need to address the needs of those with mental illness in a holistic way.  It is clear that earlier recognition of these issues by schools, the courts and society in general is desperately needed.  It is equally clear that a tendency to blame bad parenting and to call everything "attention deficit disorder" also contributes to this societal and personal (for Mr. Gionfriddo and others in the same situation) disaster that is all too common.  I only wish that I believed that the solutions he outlines would be effective.  In the same way the system he helped dismantle through legislative action and the system that he attempted to build in its place contributed to some of the problems he  has lived through, the solutions that he has outlined may have other unintended consequences as well.

Something must be done and I wish I knew the right answers and was as certain that this author is about the need for certain specific actions.  Here are some of my thoughts about his suggestions as to what he would do if he were a legislator today, taken with the understanding that I have not had to live through his experiences with his son.

• "I'd mandate - and provide funding to ensure - that every teacher receive training in recognizing symptoms of mental illness in students and how to handle students with a mental illness effectively."    I strongly agree that schools must have people who have more knowledge of mental illness.  The challenge is that training every teacher and then having those teachers only use those skills infrequently almost guarantees that those taught skills will become rusty and below that which is needed.  While our answers are often to train, we have to understand that training only works if the skills that we train on are reinforced and used in an ongoing way.  
• "I'd implement the Affordable Care Act's Medicaid expansion for single adult without delay in 2014 and put much more money into community mental health services."  As a physician who has watched the Medicaid payments get squeezed to a point where few physicians and therapists will see patients, I do have a hard time understanding how sub-optimal therapy that is expanded to more people will create better care when the resources of talented people with time to spend on each patient is still far too limited.  I too believe strongly in the promise of better community mental health services and only wish that they could be put into place with their effectiveness being measured directly by the families of those mental health patients affected.  
• "I'd integrate how services are delivered by funding collaborative community mental health  programs and have them run by mental health professionals."  Here again I worry more about how this will be done to ensure that the services are those that actually help the people involved.  Translating a good intent into effective regulations and policies is often where those pesky unintended consequences occur.  
• "Finally, I'd insist that the spirit and mandates of the federal Mental Health Parity Act of 2008 be enforced uniformly across the states."  I agree with the emotion that the intent of that law passed in 2008 should be followed everywhere but with culture and resources varying so much from state to state and from locale to locale it is hard for me to agree that all the mandates should be followed in the same way.  Rather I would like to see an understanding that people with mental illness must be treated with dignity and care so matter where they are treated and that they and their families be the people to decide if that treatment fits their need.  

Let us all share Mr. Gionfriddo's outrage and pain and do all we can to improve the total life care of those who suffer as his son suffers and to work to create a different improved path for those children who are starting to show signs of significant mental illness.