A Great Man

I see greatness every day.  That may seem strange but greatness to me is obvious in our lives and our society.  I am really fortunate because I get to see greatness in my work. The people our Health Assistants help are people who struggle to make ends meet, who live paycheck to paycheck, who work hard, and who do so in the face of illness, sick children, difficult work situations, and sometimes well-intentioned but misguided rules and regulations which just make things harder for them.  In response they still take care of their families, live their lives, and get up every morning to go to work.  That is greatness.  I see our Health Assistants really fighting for those people, crying with them, and encouraging them on a daily basis.  Those Health Assistants show greatness.  It is simple to see and it is all around us.    

This week I said goodbye to a man who personified greatness.  My wife and I have been friends with Dr. Wendy Bell and her family since Wendy and Rhonda were interns together.  They became “sisters from different mothers” as Wendy likes to say and through Wendy, I got to know her father, Mr. Clarence Crutchfield.  I had the honor of being at his funeral yesterday.   Mr. Crutchfield grew up in the segregated South at a time when it was hard for a young Black man to get ahead.  He joined the segregated Navy to serve his country in the midst of World War II and served on a ship in the Pacific as a signalman.  He then went to Tennessee State University, became a high school physical education teacher and coach, and married.  When his oldest child, Wendy, was five, he moved north to Detroit so his children could have better education opportunities and there he raised three daughters who became accomplished in their own professions.  At one point, he received his Masters in Counseling and went on to be a guidance counselor in the Detroit Public School system for 37 years.  He was a no nonsense guy who exuded dignity, respect and self-reliance and who believed in the importance of education and family above all else.  He stayed strong as the head of the family even after he retired and moved to Atlanta to be close to his daughters and his grandchildren.  Every year, when Rhonda and I would go to Wendy’s house for Christmas dinner, he was always at the head of the table, leading the opening prayer, and being the rock, the foundation, of a family that was anchored in faith and love.  That is greatness.  He took care of business.  He took care of his family.  He was strong in the face of adversity.  He was a man who would not be obsequious to anyone and for whom complaining was never an option.  That is greatness.  I truly loved that man and admired him tremendously.  He was a man who really would judge someone on the content of their character and not the color of their skin.  When he was at his granddaughter’s wedding and she was marrying Eric who is extremely fair skinned with red hair, he was thrilled and said to me, and to anyone else who was listening, that the world had really changed.  There was no one happier than he was.  He never stayed in old paradigms and rather recognized that the world does change and sometimes even for the better.  That is greatness.    

When I think of him, I think of the old parable that is sometimes called “The Rabbi’s Gift” and sometimes called “The Messiah Among Us”.  I tried to find the source of the story and could not.  I first found it referenced in a book entitled “Deep Down Things: Selected Writings by Richard McCullen CM written in 1995.  Father McCullen was the Superior General of the Congregation of the Mission which is the organization of priests and brothers who follow St. Vincent and are often called the Vincentians.  I first read the story in “The Art of Possibility” by Benjamin Zander but it was M. Scott Peck in his book, “The Different Drum”, who is usually given the credit for popularizing the story. 

A monastery had fallen upon hard times. Once a great order, there were only five monks left in the decaying house: the abbot and four others, all over seventy in age. Clearly it was a dying order.

In the deep woods surrounding the monastery there was a little hut that a rabbi from a nearby town occasionally used as a retreat. On one occasion when the rabbi was in his hut, the abbot decided to go and speak with him and ask the rabbi if by some possible chance he could offer any advice that might save the monastery.

The rabbi welcomed the abbot at his hut. But when the abbot explained the purpose of his visit, the rabbi could only commiserate with him. “I know how it is,” he exclaimed. “The spirit has gone out of the people. It is the same in my town. Almost no one comes to the synagogue anymore.” So the old abbot and the old rabbi wept together. Then they read psalms together and quietly spoke of deep things. The time came when the abbot had to leave. They embraced each other. “It has been a wonderful thing that we should meet after all these years, “the abbot said, “but I have still failed in my purpose for coming here. Is there nothing you can tell me, no piece of advice you can give me that would help me save my dying order?”

“No, I am sorry,” the rabbi responded. “I have no advice to give. The only thing I can tell you is that the Messiah is one of you.”

When the abbot returned to the monastery his fellow monks gathered around him to ask, “Well what did the rabbi say?” “He couldn’t help,” the abbot answered. “We just wept and read psalms together. The only thing he did say, just as I was leaving –it was something cryptic– was that the Messiah is one of us. I don’t know what he meant.”

In the days and weeks and months that followed, the old monks pondered this and wondered whether there was any possible significance to the rabbi’s words. The Messiah is one of us? Could he possibly have meant one of us monks here at the monastery? If that’s the case, which one? Do you suppose he meant the abbot? Yes, if he meant anyone, he probably meant Father Abbot. He has been our leader for more than a generation. On the other hand, he might have meant Brother Thomas. Certainly Brother Thomas is a holy man. Everyone knows that Thomas is a man of light. Certainly he could not have meant Brother Elred! Elred gets crotchety at times. But come to think of it, even though he is a thorn in people’s sides, when you look back on it, Elred is virtually always right. Often very right. But surely not Brother Phillip. Phillip is so passive, a real nobody. But then, almost mysteriously, he has a gift for somehow always being there when you need him. He just magically appears by your side. Maybe Phillip is the Messiah. Of course the rabbi didn’t mean me. He couldn’t possibly have meant me. I’m just an ordinary person. Yet supposing he did? Suppose I am the Messiah? O God, not me!

As they contemplated in this manner, the old monks began to treat each other with extraordinary respect on the off chance that one among them might be the Messiah. And on the off-off chance that each monk himself might be the Messiah, they began to treat themselves with extraordinary respect.

Because the forest in which it was situated was beautiful, it so happened that people still occasionally came to visit the monastery to picnic on its tiny lawn, to wander along some of its paths, even now and then to go into the dilapidated chapel to meditate. As they did so, without even being conscious of it, they sensed the aura of extraordinary respect that now began to surround the five old monks and seemed to radiate out from them and permeate the atmosphere of the place. There was something strangely attractive, even compelling, about it. Hardly knowing why, they began to come back to the monastery more frequently to picnic, to play, to pray. They began to bring their friends to show them this special place. And their friends brought their friends.

Then it happened that some of the younger men who came to visit the monastery started to talk more and more with the old monks. After a while one asked if he could join them. Then another. And another. So within a few years the monastery had once again become a thriving order and, thanks to the rabbi’s gift, a vibrant center of light and spirituality in the realm.

Greatness is a gift given by those who radiate goodness and caring.  Greatness is all around us in the people we may least suspect.  Clarence Crutchfield was a model of greatness.  Greatness is in those who take care of their families, live their lives, and create light and hope for their children and for their community.  As our Health Assistants at Accolade help their clients, I know that they benefit from coming in contact with the greatness in those they speak with on a daily basis.  The challenge is recognizing the greatness in those people in the course of our work routines.  My hope for this season is that as Health Assistants we see, admire, and acknowledge the heroes we help.

When Tragedy Strikes Children

I sent this out to my team at Accolade following the horror at Newtown CT:

This past week, we all witnessed the horror of small children attacked and killed while they were in the safest place imaginable – their school.  We, in the business of caring, watched this with the rest of the world as it played out on our computer news feeds and on our television sets.  There is no way to make sense of this and I will not try.  I will, however share my thoughts on how we help the living following this crime.  How we focus on being the support that they may need through these horrific times. 

For all of us, the thoughts of our own children and our own families naturally come to mind.  I have three grandchildren in Connecticut and I could not help but think about how vulnerable they are.  My wife immediately took out a map to see how close Stamford, where they live, is to Newtown, the site of this atrocity.  We all needed to find ways to reassure ourselves about those we love, at the same time feeling a little guilty at our own relief as we thought of the parents and grandparents who would find no such reassurance as they learned that their own precious gifts were gone in the worst possible way. 

Here at Accolade, while we may seem far removed from this tragedy, we may be helping those in the media whose job it is to cover this story with sensitivity and care while trying to deal with the personal feelings and emotions the tragedy can invariably elicit in them.  We may have people we help who have lost children for which this episode brings memories that are too painful to bear.  We, ourselves may have our own histories and tragedies that this brings too clearly into focus.  Through all of our own personal prisms, we have to help. 

The first thing to realize as we try to help those who are affected is that there really is nothing we can do that is concrete to take away the horror.  We cannot go back in time and try to treat the lost soul who carried out this abomination.  We cannot go back and increase the security at that school to prevent his ability to get into the building.  We cannot position an alert police officer there who intervenes to save the day just before the tragedy as would probably happen in a television program.  We can, however, do what we do best.  We can listen.  We can empathize.  We can provide resources such as mental health professionals to help people though the immediate agony and the aftermath.  We can be there for those in need, sometimes just by quietly being with them, saying little but letting our presence be a small comfort for them. 

Rabbi Shaul Praver who was the Rabbi of the youngest victim, Noah Pozner, may have put it best when he was asked to give an explanation for such a horrific act.  He said, "I don't know the answer to that.  I never try to present a theological answer to that.  I think what's more important is to have compassion, humanity and hold someone's hand and hug them and cry with them."  

That is our role here at Accolade.  We are fortunate to have tremendous expertise in our own Accolade family as we try our best to help people deal with the aftermath.  Turn to the experts.  Ask for help.  Don't try to work through the pain alone.  We have to have compassion, humanity and to hold someone's hand, even over the telephone, and make our verbal hugs felt.  That will not be easy.  That effort will call upon us to feel emotions that are not pleasant or positive.  But that is what we must do for those affected.  It is what we do and there is no more important time to do it than in moments such as this.  

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Medical Options: Understanding the Shifting Sands of Expert Opinions

One of my favorite sections of the New England Journal of Medicine is the interactive on-line section entitled “Clinical Decisions”.  The section is organized as described in the journal:  “A case vignette is followed by specific options, none of which can be considered either correct or incorrect.  In short essays, experts in the field then argue for each of the options.”  Think about that:  “none of which can be considered either correct or incorrect”.

I love this section because so much of what is written about medicine presents it as always having a “right” and a “wrong” answer and that is often not the case.  More commonly, there are multiple options that must be considered and those options are further complicated by the social, psychological and even spiritual lives that the individual patient lives.  Thus the best decision for one patient is not the same as the best decision for another.  For this reason patients should never turn decision making over to their physicians and should instead, always retain the ability to make their own decisions based on understanding the issues and having the options spelled out for them in an understandable form.  Ultimately, any decision must be informed by balancing the potential risks with the potential benefits and also balancing a person’s own values, beliefs and live situation.  How one does that is very personal. 

As an example, this week’s Clinical Decision section is entitled, “Mammography Screening for Breast Cancer” and presents a case of a healthy 40 year old woman with two children who has no family history of breast, lung or colon cancer.  The three options given in the article are:

1. Recommend screening mammography starting at the age of 40
2. Recommend screening mammography starting at the age of 50
3. Do not recommend screening mammography.

The first author who supports screening starting at age 40 argues that the potential benefit of finding an early cancer is so great, that any potential harm of a false positive exam is small.  He states, “What about harms?  The risk of a false positive finding is greater than 50% during a decade of regular screening, and false positives are associated with temporary anxiety.  Nevertheless, women have reported that they accept the trade-off of false positives in favor of finding breast cancer early.”  This author seems to minimize the risks and sees the potential benefit as surpassing almost any risk.  He speaks of women as a group who do not care very much about the risk of false positives.

The second essay spells out those potential benefits in more specific terms but then decides that the risks justify the benefit only in women over 50 or women under 50 with specific risk factors.  Rather than just finding an unanticipated breast cancer, the authors state that the benefit must be defined as “breast cancer deaths averted and life-years gained by the detection of biologically significant cancers before they become apparent clinically.”  The risks or harms in this essay are “false positive tests, radiation exposure from screening and follow-up imaging, invasive follow-up procedures, and over diagnosis.”   They also point out that screening mammography is less accurate in younger women and result in a higher rate of false positive tests and a lower rate of breast-cancer deaths averted leading them to the opinion that mass screening for women with no risk factors should not occur until age 50. 

The last essay takes the position that no screening should be done.  This author notes that as many as 31% of all breast cancers in the United States are over diagnosed and can therefore result in more harm than benefit.  He goes on to say, that from a public health and public policy point of view, many more cancers would be averted at lower risk if the efforts to encourage screening mammography were instead used to encourage use of aspirin routinely.  He states, “The use of aspirin for 5 years, as compared to no use of aspirin, reduced the 10-year risk of death from cancer by 1.3 percentage points but increased the risk of major bleeding by 0.4 percentage points.  Clearly, the benefits are much smaller and the harms much greater with mammography screening.”

All three of these essays, are written by experts in the field.  All three are using the same body of medical literature and medical data.  All three are therefore correct according to current knowledge.  So what is the answer?

The answer is individual decision making and choice.  There will be those women who very strongly value the knowledge that an early test is negative and will accept just about any potential harm to have that knowledge.  There will be those women for whom the relative inaccuracy of the screening test at the younger age will convince them to wait until age 50 to start screening.  There will be those women who look at the survival numbers with and without screening for low risk women and will decide that testing seems to be unnecessary.  All will be correct. 

This is part of the real world of medicine.  This is part of the reality that patients and health professionals alike face despite the push from health policy experts and legislators to codify medical treatment into nice, neat algorithms that always hold for everyone and are only paid for if you happen to fit the mold that they have defined.  The wonderful fact is that we are all different.  We may share biology but that biology is put together differently for all of us and we must acknowledge and even celebrate those differences in all of life, including in medical care. 

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Dr. Bill Frist on Individualized Care

Dr. Bill Frist, heart surgeon, business leader, former Majority Leader of the United States Senate, and humanitarian writes widely on health reform and related topics.  No matter your politics, one must look upon all that Dr. Frist does with awe, starting with work that he does on health reform, to basic science of heart transplantation; from issues of global health policy to the economic development of poor countries; from leading medical missions around the world to advancing the cause of HIV/AIDS treatment around the world; even to helping the health of the mountain gorilla.  I must add that he is also a member of the Board of Director of Accolade, where I serve as Chief Medical Officer. 

A recent article he wrote on health reform deserves attention.  In it, he points out certain facts about the individual nature of health care that are important in our health reform debates and even more important in the care of people who use the medical system.  To quote this article:

Too much of medicine today centers on the average or "median" patient. That is what "evidence-based medicine" and much of "comparative effectiveness" is all about. We test drugs on large populations and if on average the drug helps, we license it, but only at a standard dose for all. That era is passing. An individual patient is never the median patient.

At Accolade, we live this every day with our clients as they struggle through a health system which appears to be more and more focused on that mythical “median” patient.  We help them find their own voice and encourage them to take ownership of their own care helping them insist that physicians, nurses and even health administrators and health plans see them as the unique individuals that they are.   When we do that well, people receive better care.  In the end, for society as a whole, this better care costs all of us less as customized individualized care leads to fewer complications, better results and fewer unnecessary activities that contribute little to the goal of cure or control of illness.  That is the true “cure” for our health system woes.  

Screening Tests, Checkups, and Confusion

There is a strong general belief that screening tests and checkups are important elements in improving health for individuals and also good for the greater public.  However a recent comprehensive review published by the Cochrane Library, on the value of general health checkups, questions the value of such regular exams.  At the same time, there are ongoing debates about the specifics of screening tests.  Some of the recent controversies concerning the proper age to begin screening mammography for breast cancer and use of PSA blood tests in screening for Prostate Cancer underscore these debates. Combine all this controversy about specific tests and add in this large study questioning the basic philosophy of regular checkups and screening and you get some massive confusion.  It is reasonable to ask why we argue about these details of screening if, according to the Cochrane study it is all worthless anyway! 

My writing about this started out quite simply as a way of bringing a change in the screening recommendations for Chronic Hepatitis C infection to people’s attention.  In August of this year, the CDC published a recommendation that all people born between the years 1945 and 1965 (aged 47-67) should have a one-time test for chronic Hepatitis C.  This represented an addition to previous recommendations from the CDC for people of all ages who fit certain risk groups, such as a prior history of IV drug abuse or a being a physician or nurse to be screened.  Due to my compulsive nature, I decided to also look at the recommendations of the UnitedStates Preventive Services Task Force (USPSTF).  This independent body under the auspices of the Agency for Health Research and Quality (AHRQ) which is part of the Department of Health and Human Services is an arbiter of recommendations concerning screening tests.  The CDC on the other hand is a part of the Department of Health and Human Services and is not an independent body.  To my surprise I found that the USPSTF had a different recommendation than the CDC.  This was explained in the CDC article published in the Annals of Internal Medicine that recommended the broader screening for Hepatitis C.  It said:

 The U.S. Preventive Services Task Force (USPSTF) and the CDC both issue preventive recommendations using evidence-based methods that include evaluating available data on a topic and drawing conclusions on the basis of the strength of the evidence. However, several differences exist between the organizations, including their affiliation, target audience, and scope. ....... The USPSTF focuses on the primary care setting and provider-patient interactions and considers the harms and benefits (generally, reduced morbidity and mortality) to the patient directly resulting from a given intervention. The CDC has a broader public health focus that includes diverse settings outside of primary care and considers not only the benefits and harms of an intervention but also the potential harms of an absence of public health action and of future transmission of disease.

The USPSTF's HCV screening recommendations and the CDC's birth cohort recommendation are not in direct conflict, and updated USPSTF recommendations are expected within a year. In 2004, the USPSTF found insufficient evidence to recommend for or against HCV screening among high-risk persons (for example, persons who have ever injected drugs) and against routine testing for all asymptomatic adults ( 39). The CDC's recommendation for 1-time HCV testing is only for persons born during 1945 to 1965, not for all adults. The CDC's recommendation is, to a large degree, built upon an intermediate measure (SVR) and its strong association with reductions in HCC and all-cause mortality.

Are you now clear on what screening for Hepatitis C should be done?  So what do you do?  Who do you follow?  Should you follow the recommendations of the CDC, the USPSTF or in the case of other screening recommendations  some other group such as the American Cancer Society or the American Heart Association?  Or should you, following the Cochrane report, just ignore all of them and give up on regular checkups and the screening that accompanies them?

The Cochrane report was comprehensive.    They reviewed 16 studies, 14 of which had outcome data on 182,880 people.  To quote their conclusion,

“General health checks did not reduce morbidity or mortality, neither overall nor for cardiovascular or cancer causes, although the number of new diagnoses was increased…….With the large number of participants and deaths included, the long term follow-up periods used, and considering that cardiovascular and cancer mortality were not reduced, general health chicks are unlikely to be beneficial.” 

What is going on here?  How is an individual to decide what to do?

 

The reality is that the image of certainty that pervades the public perception of health care is faulty.  Good health care is really riddled with uncertainly and is dependent on a careful assessment of the balance between the risks and benefits of a particular test or therapy for a particular individual at a particular point in time.  While screening tests and procedures and general check-ups are supposed to be independent of those individual variables as they are recommended for broad segments of the population the decision to undergo screening is often not so straightforward.

The definition of screening is “A test or procedure performed for a patient who does not have symptoms, abnormal findings or any past history of a disease in order to detect an unsuspected and undiagnosed disease so that medical treatment can begin.”  The timing and frequency of such a test is usually defined in the screening recommendation, such as the timing for a Hepatitis C test as being once anytime for a person aged 47 to 67 or the timing for mammography being  yearly for women over 40 or 50 depending on which screening recommendation you follow.  They are supposed to be for everyone defined under the screening criteria.  A general checkup as studied in the Cochrane Library review is one type of screening exam and often includes many of the tests and procedures covered under the detailed recommendations.

 

The reality that is often ignored in all these studies and all these recommendations is that a person often decides to see a physician for a “general checkup” because they are not feeling well, sometimes in a very non-specific and vague way.  Perhaps they are just feeling a bit sluggish or weak; perhaps they have gained or lost some weight.  The good physician then takes a history to try and pull from the patient the information to better define how they are really feeling.  The tests and procedures may then be considered diagnostic and not screening however how they are recorded becomes a function of payment and insurance, not of clinical analysis.   The insurance data bases that many of these studies use for clinical analysis code the exam in the way it is submitted by the health professional and that may be preventive or screening because under today’s rules, that is often paid at a higher rate.  It is hard to say how those very common situations of vague reasons driving the regular exam fit into the data on specific screening tests or on general checkups.

 

So as for me, I will continue to see my doctor once a year.  As for Hepatitis C, I will have one time testing as I fit into the age category and into the high risk category, especially because while in practice I specialized in gastroenterology and came in contact with large numbers of people with liver disease.  My recommendation to you is to always be an active participant in your care.  Regardless of the statistical benefit of a routine checkup, a good relationship with a doctor who you can call on in time of need is always a good thing.  It may take a general checkup to develop such a relationship.  Determine your own particular risks and your own values and beliefs in making decisions about your own care including decisions about screening.   Then make your own decision based on all of the facts.  What makes sense for a population may or may not make sense for you as an individual at a particular point in time. 

A 60 year old Physician at Health 2.0

As I walk around Health 2.0 here in San Francisco, I am struck by the number of “kids” walking around with the title “CEO” on their name badge.  I met someone I have known for years who is with an exciting new start-up company and said to him, “I see your CEO is 12 years old”.  He laughed in response and said that the founder’s youth made him pause before joining the company however the idea behind the company and the enthusiasm of the young staff was so compelling that he signed up and is happy that he did.  The uniform of the day here is jeans, a backpack slung over one shoulder and an iPad in your hand.  It is not considered rude to look at your iPad or iPhone as you speak to someone as it would be in a different setting with a different age group.

But is there substance?  What is being showcased and discussed here?  There is clearly a focus on the person as consumer and trying to find the right combinations of wizardry and entertainment to motivate people towards doing what is right for their own health.  Once you get beyond that, much of the technology is still focused on self-help programs that help you track your weight, track your diet and track anything else that may help with lifestyle induced illness.

 

There are apps that have you enter your own data, there are companies that apply gaming and incentives to your losing weight, and there are companies that offer  discounts and coupons for the correct activities.  There are those companies that attempt to connect you to communities, usually via Facebook to create camaraderie around specific issues, such as weight loss and healthy competitions within those communities. 

There are those companies that have devices you wear with the goal to make tracking your own body activities more automatic starting with those that focus on pedometers and activity meters and progressing to the elegant sophistication of Body Media with its in depth monitoring of multiple parameters including activity, diet and sleep.  I heard the Chief Medical Information Officer from Vanderbilt talk about the need for physicians to have real time information on patients as they walk around and live their lives in order to better treat them.  He used high blood pressure as the example of an illness/risk factor that could be better controlled through this type of monitoring.  Even with the Vanderbilt example, most of the technologies in this, consumer focused segment of Health 2.0 is for people who are basically healthy with no illness or the hidden illnesses of hypertension, metabolic syndrome, and other lifestyle impacted illnesses and risk factors.  While this can also be applied to the people with insulin dependent diabetes or other active and chronic diseases, that was spoken of much less during the presentations and demonstrations that were consumer oriented. 

There are those companies that are addressing the issues of in-hospital care that needs to be transitioned to outpatient care.  They tend to be more internally focused to the health systems and to the physicians than to the broader community.  I sat and listened with fascination to the Chief Technology Officer for Athena Health talk of the current efforts by health systems to retain everything under their own control, even the patients, to “Biosphere 3”.  For those of you who don’t remember, "Biosphere 2" was an effort in the Arizona desert to create a self-contained world within a geodesic dome that shut out the entire outside world.  It failed miserably.  His point was that free movement of ideas, technology and ultimately patients in the health system and the loss of the type of control these health systems crave will actually lead to better ecosystems of health care using technology.

 

There are physician search companies that appear to have given up on trying to define “quality” in those physicians and instead focus on convenience, service, and cost.  There are a bevy of physician search companies focusing on the International market and seemingly avoiding the US completely at this juncture.

 

I listen and learn and do see certain technologies that may apply more to people my age.  These include technologies that remind people to take their medications and thus can increase compliance; technologies that help physicians have up-to-date information at their fingertips as they are seeing patients.  It often appears that the technology with the least whiz-bang graphics and the most simplicity holds the greatest promise of being incorporated into everyday use. 

So I find myself surrounded by very bright, enthusiastic, idealistic young men and women who see the promise of technology to help people and to help health care become more consumer oriented, more in touch with tools of social media and gaming, and potentially more efficient.  I do worry however.  I also see a certain amount of the arrogance of youth in believing that technology is the entire answer.  I see “neat” technologies that are not as simple as are needed for a person who is truly sick or disabled.  I see little concern and attention really to privacy and confidentiality.  I sit here and wonder if the wisdom of age has to somehow be added to the youthful exuberance that is pushing this Health2.0 movement forward. 

Whether it is wisdom of age or just an outdated view of the world, I worry about a few specifics:

Human Dignity:  I worry that little to no attention is given to privacy and confidentiality and the ethical issues involved in having health information, sometimes from sensors that you wear, floating out there in cyberspace and available to so many people.  While the promise of better coordination and better clinical results is exciting and compelling, we need to be thoughtful and start discussing and debating how to keep privacy and individual human dignity in all of this.

Confusing Diagnosis and Treatment with Healthcare:  While many of these programs make the clinical elements of diagnosing and treating more efficient, they seem to leave out too much of the human element that is so critical to health care.  Standardization and automation is good except when it fails to account for human individualization based on social, psychological, and even spiritual aspects of that person’s life.  Complexity in health care is not just a function of the complexity of human physiology.  In many ways that is the simplest part of the equation.  Good healthcare must include all of those human elements that make a person a person and make a family a family.  An app may certainly have a place but I suspect that human complexity often needs human interaction. 

    

Understanding that people who are sick are also consumers:   So many of the technologies that were built for people with active illness was focused on use by doctors and health professionals.  I listened and thought that more of the consumer tools had to be applied to people with illness and not reserved just for those who were fundamentally healthy and with risk factors and hidden illness.  People as patients need to have more control while they are in the health system clutches and when they are transitioning between parts of the health system.  There must be a democratization of health care and technology can facilitate that.  In that perspective I may be more radical than the younger generation that predominates here.

 

Point of View:  So many of these efforts appear to reflect the point of reference of a smart, twenty-something who wants to change the world when the point of a forty-something truck driver who is overweight, has kidney stones and metabolic syndrome, has three kids one of whom has special needs, and a wife with diabetes who must work as a waitress for them to make ends meet, is ignored.  How do we create apps, programs and bring Health2.0 to people who are heroes in supporting their families, working hard and also coping with health problems that are, in their minds, secondary to the everyday battles that they must fight to be the types people they want to be.  I don’t know if Health 2.0 fully understands that need yet. 

So I try to incorporate the best of Health 2.0 to bring back to Accolade where we remain focused on the human elements of health care decision making; the often messy but also often noble lives that people live every day as they try to deal with their health while also dealing with issues that are potentially much more important to them such as their children, their spouses and even the pride they have in their everyday work.  I only hope the prospective I bring as a 60 year old does not get in the way of seeing the brilliance that is around me this week in San Francisco but does allow me to see it through eyes that have seen the pain and suffering that good people overcome each day.  

Open Notes: A New Movement or Just Good Medicine

The latest Annals of Internal Medicine includes a“quasi-experimental” study on the use of open notes in outpatient care.  The Open Notes study followed 100 primary care doctors (all in either academic, Veterans Administration or Group Model practices) and a subset of their patients in three geographies, with surveys and interviews, to assess how opening the patient’s medical record to the patient after an office visit would affect the patient and the physician.   Not surprisingly, the patients loved it and the doctors were okay with it (my interpretation of the survey results).    The study started with three hypotheses.  “First most patients would read the notes, and those who did would report both greater engagement in care and improved management of health and illness.  Second, the intervention would have few adverse effects on the doctors’ frenetic work lives.  Third at the end of the approximately 1 year intervention, a large percentage of doctors and patients would choose to continue with open notes.”   

  The “quasi –experimental” nature of the study does not allow one to give definitive pronouncements on results, however it appears that the first two hypotheses were supported by the study and the third was partly supported.  That is the patients overwhelmingly reported greater engagement in care when they had the ability to see their own notes and wanted to continue with open notes while the physicians found it did not make much difference to their practices with two thirds of the doctors willing to continue with open notes when asked.  It is interesting to note however that when open notes just continued after the study period ended, none of the doctors asked to be removed from the program so one can assume that the one third of doctors who said that they did not want to continue did not feel strongly enough to break through the inertia of daily practice to actually request removal.

This is fascinating to me as it takes these academic, VA and group model practices, which are types of practices that do not see the majority of patients in the United States, and does something that is routine in many physician practices around the country, publish it in a major peer reviewed journal and call it groundbreaking.  When I was in practice more than twenty years ago, I dictated my notes while in the room with my patient so that they could hear what I was putting into the record and correct and add to the notes as they listened.  I was not alone in that practice.  I always offered to send copies of the notes and encouraged my patients to make corrections and give input.  My wife, in her current practice, seeing very complex sick children with genetic illnesses, routinely sends copies of the letters sent to referring physicians to the parents of those children.  In my own primary care doctor’s practice, copies of the notes from my office visit are routinely mailed to me after visits.  Every year the notes from my complete history and physical are also mailed to me, as the patient, along with a zip drive to carry with me for emergencies.  This is just good practice and many physicians around the country have been doing this for years.

 

Yet I still welcome this article and the way the authors have studied this practice.  Sometimes, studying and highlighting what seems obvious; the need for a person to own their medical records and see everything that is written about them and their body is still necessary as it may not be obvious to everyone.    There are those who still fear the information in a medical record may confuse a patient or cause undue stress.    This study does not support that fear and instead suggests that open access to information appears to diffuse fear and give people more of a sense of control and involvement in their own care.  A health professional should be open with a patient. That is part of the trust and part of the doctor/patient relationship that has almost religious aspects to it. That should hold true for doctors, nurses, therapists and all health professionals.  That is part of the calling of medicine and health care. 

Many good physicians, have always believed that a person’s independence and autonomy requires them to be the “owner” of their medical records and if they do not physically keep those records they should at least have unfettered access to them.  At Accolade, we support and assist people through the health care system and suggest to that that they ask for copies of all records and notes at the time they are being seen.  We also suggest that they should read and question everything in those records.  In many ways, electronic medical records, email with physicians, and other electronic methods that capture clinical information and personal information make this requirement even more urgent.  Electronic medical records have led to the phenomena of “copy and paste” of bad information and dictations can be associated with faulty transcription leading to incorrect information in the record.  When a patient has a chance to review and correct what is just plain wrong, their care is improved and they are empowered as people. 

What does that mean for patients? 

• Each person should own their own records.  A person should ask for copies of notes, test results and imaging exams for all of their care.
• Each person should ask their care givers with help to best interpret those records so that they understand what is being said in them. 
• If a person sees information in a health record that is inaccurate or incomplete, they should bring that to the attention of their caregiver who wrote the note so that the note can be amended or the new , corrected information can be added to the record.  That can decrease the risk of bad decisions being made in the future based on faulty information. 

One more word about “quasi-experimental” studies as this is one of two such studies in this latest issue of the Annals.  On one hand, I am happy to see the world of academic medicine giving more respect to the clinical studies and studies based on surveys that are uncontrolled that, in the past, have been looked on with disdain.  On the other hand, I wonder if in calling it “quasi-experimental” and giving it the mantel of scientific purity, there is a chance for confusion between reports based on uncontrolled surveys and true controlled experimental design.  In the final analysis, my joy at seeing respect for clinical uncontrolled studies overtakes my suspicion at the perhaps misleading terminology of “quasi-experimental”.