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”.