It is a heart pounding, head spinning, edge of your seat page-turner; the sort of rare saga that takes your breath away as it changes you, forever. It hints at a radically different future, a completely new world a few years away, which will disrupt the lives of every man, woman and child. Available now, from the National Coordinator for Health Information Technology (ONC), Office of the Secretary, United States Department of Health and Human Services, is finally, without further ado; the Federal Health IT Strategic Plan 2015 – 2020.
You think I am kidding. A satirical dig at another monstrous, useless, governmental report? Absolutely not. The concepts outlined in this blueprint will transform healthcare. It is a tight, clear, document, which at only 28 pages, delivers almost as much change per word as the Declaration of Independence. This may be the most powerful application yet of computerized information technology.
If you want to know where healthcare and health IT are headed, The Plan is absolutely worth a read.
I have only one complaint; it is coated with too much sugar. Restricted by policy structure and jargon, the report does not go far enough.
Such a good question from my friend David Shaywitz, MD, PhD, (and co-author with me of the book Tech Tonics). David has spoken and written about this this theme frequently, and most recently at the Health 2.0 conference held last week in Santa Clara, CA. He and I and 2000 of our closest friends were there to talk healthcare technology. Isn’t it ironic that it takes that level of human interaction to talk about the ways healthcare can disintermediate humans from healthcare?
What struck me so loudly at the conference was how easy it is for us all to forget how human the healthcare experience really is. I moderated and attended numerous sessions at the conference, each a twist on the theme of how technology can make healthcare delivery more accurate, more efficient, more effective than anything we have going today.
David participated in a session withMatthew Holt, Vinod Khosla and Dr. Jordan Shlain, who could not be farther part from each other on the topic of doctor vs. machine (David played the role of moderate guy in the middle), Mr. Khosla backed away or at least clarified his earlier statements about how 80% of doctors will be unnecessary in the coming new age of healthcare technology. His revision was that 80% of alldiagnosis will, in the future, be done by computers, not doctors, because computers are far better at seeing a holistic view of a patient and taking in all of the relevant data. He talked about how certain digital technologies can know everything about you, including when you are sleeping and when you are awake. It made me think that Santa Claus must be worried about being replaced by an app.
We all know “that patient” – the one we may dismissively label “noncompliant.”
The person with diabetes whose HA1C is consistently above normal limits – the one who swears, when confronted with the numbers (yet again) he’ll start eating right and using his insulin as prescribed.
And yet, month after month, the lab work tells a different story. We watch in helpless frustration as patients like these spiral downward, developing complication after complication.
I thought about “that patient” as I read a recent Wall Street Journal article describing Dr. Judith Hibbard’s Patient Activation Measure (PAM), which she and her colleagues at the University of Oregon developed some years ago.
First, let me say I greatly admire the research and work of Dr. Hibbard and her team; I believe that the PAM is a wonderful tool and a step forward in better understanding patients.
While the article, and Dr. Hibbard, argue that the use of the tool can better target the needs of patients – and I agree – I can’t help but worry that the entire premise that patients need to be “activated” misses a point.
Patients are people before they are patients.
We know that when people are sick, they are still part of their broader world of family, friends and finances. We also know that their social, spiritual and psychological selves are every bit as important, and as important to their “cure” as their activation as a patient.
I suspect that Dr. Hibbard would agree with me and even argue that the PAM reflects all of these factors.
PAM is accurately diagnosing the end state – how all these factors impact the patient and the patient’s ability to be involved in his or her own care.
I worry, however, that the PAM may be oversold by healthcare administrators who put it in place as a way of trying to address all the factors that affect patient activation.
The American Psychiatric Association recently published a new version of the Diagnostic and Statistical Manual (DSM). The DSM-5 is what medical, mental health, and chemical dependency professionals use to diagnose developmental, mental health, substance abuse and dependence, learning, and personality “disorders.” Now in its 5th edition, the DSM was first published in 1952. At that time, the DSM was 129 pages containing 106 diagnoses.
Now, 61 years later, the DSM-5 consists of approximately 950 pages and roughly 375 diagnoses. The DSM-5, while researched far more than previous editions, is based on the medical model or the model of disease. Simply put, the medical model finds the causes of disease and illness and then prescribes a treatment to cure the disease or illness. This means a person has a pathology or pathogen that needs to be treated and cured.
The questions that eat at me during my day as a psychologist and at night as a person searching for answers are:
Is it possible to accurately identify mental health “issues,” “illness,” or “disorders?” versus extreme ranges within the sphere of the human condition?
Even if it is possible to identify these conditions, does it determine the course of “treatment” or “intervention?”
If so, is there a “treatment” for every identified “condition?”
Does it mean there is a treatment that works?
Do you need a diagnosis to get help?
Over the years, many have been critical of this approach to mental “health” issues. Referring to mental “health” is actually a newer name as people have historically been thought to have mental “illness.” This makes more sense for people who are unfortunately compromised by severe conditions termed schizophrenia, bi-polar (manic-depressive), and severe depression and anxiety. But does this make sense for children, adolescents, and adults who are challenged with some other, and possibly less severe, aspect of their functioning and development? Do all human problems warrant a medical or mental health diagnosis? When did a weakness become a “disorder” that requires “intervention” and/or “treatment?”
To be fair, the DSM provided structure and guidelines for approaching the complicated business of determining who had a “problem” that required help. However, it seems things have gone too far. Critics of the DSM believe that this latest edition has taken the business of diagnosing to a new level, one where approximately 50% of the population can be diagnosed with something. Critics also believe that this pathology finding approach supports the continued trend of medication prescribing as the number one mode of treatment, and continued trend of increased health care costs and premiums with increased utilization of individuals who need a “diagnosis” to meet “medical necessity” to receive services. What does that mean? It means if you don’t have a diagnosis, you don’t get help. It means you have to have a problem (pathology) to get help (treatment and intervention).
Without going into detail about some of the changes in the newest edition of the DSM, some diagnostic categories have been added and some diagnosis “thresholds” have been lowered. This means that you need fewer symptoms to “meet diagnostic criteria.” Here are some examples of concerns with the new DSM-5:
Temper tantrums will now be diagnosed as Disruptive Mood Dysregulation Disorder
Normal forgetting will now be diagnosed as Minor Neurocognitive Disorder
Gluttony will be diagnosed as Binge Eating Disorder
Grief will be diagnosed as Major Depression
First time substance users and college partiers will get a diagnosis of Substance Use Disorder
It seems that Dr. Larry Weed is commonly referred to as the father of the SOAP note and of the problem list.
Having read his book, I’d say he should also be known as the father of orderly patient-centered care, and I’d encourage all those interested in patient empowerment and personalized care to learn more about his ideas. (Digital health enthusiasts, this means you too.)
Skeptical of this paternity claim? Consider this:
“The patient must have a copy of his own record. He must be involved with organizing and recording the variables so that the course of his own data on disease and treatment will slowly reveal to him what the best care for him should be.”
“Our job is to give the patient the tools and responsibility to organize the knowledge and slowly learn to integrate it. This can be done with modern guidance tools.”
These quotes of Dr. Weed’s were published in 1975, in a book titled “Your Health Care and How to Manage It.” The introduction to this older book is conveniently included as an appendix within “Medicine in Denial.” I highlighted it this section intensely, astounded at how forward-thinking and pragmatically patient-centered Dr. Weed’s ideas were back in 1975.
Thirty-eight years ago, Dr. Weed was encouraging patients to self-track and to participate in identifying the best course of medical management for themselves. Plus he thought they should have access to their records.
I mean ensuring that we all keep up with *everything* on the medical problem list, so that symptoms are adequately managed, chronic diseases get followed up on correctly, appropriate preventive care is provided, and we close the loop on previous concerns raised.
This, I have found, is not so easy to do. In fact, I would say that the current norm is for health issues to frequently fall between the cracks, with only a small minority of PCPs able to consistently keep up with all health issues affecting a medically complex adult.
Q: “What is a well person?”
A: “A well person is a patient who has not been completely worked up.”
As I enter the exam room, a smiling 10-year-old boy greets me. Pete, my last patient of a long day, is here for his annual well visit. I chat with him about his life — home, school, nutrition, exercise, sleep, etc. — and I’m struck by something. Pete is really well. He’s well-fed (but not too much), active and well-rested, and, most importantly, he’s happy. He has not been to see me in an entire year, and only comes in for preventive health counseling. I think back on my entire day… and on my whole week. Pete is different from every other child I have seen this week. He is, in fact, the only truly “well” child I have seen in a long, long time. And I wonder — is he the last?
I’ve begun this post with a short riff on Dr. Clifton Meador’s satirical masterpiece, “The Last Well Person,” published in the New England Journal of Medicine in 1994. Meador profiles a 53-year-old man he imagines to be the last known truly “well” person in the U.S. in 1998. The patient is subjected to every known evaluation and found to be basically undiagnosable. I reflect on this story each day as I enter one examination room after another, visiting with patients (and their families) in my pediatric practice.
Sadly, the story of “Pete” is real. I no longer see many well kids even though I am a primary care pediatrician, dedicated to keeping kids healthy. Yes, I devote much of my time to counseling parents about lifestyle choices (e.g., nutrition, exercise, play, rest, sleep) to promote wellness and prevent disease. Still, each and every encounter must be “coded” with a numerical set of instructions based on diagnoses (associated with disease states) so that I can get reimbursed for the care I deliver. My ability to keep my office open (so that I can continue to try and help families keep their children healthy) is predicated on my skill in playing this diagnostic code game.
A young doctor and his wife had just moved to the mountains of eastern Kentucky, near the border of West Virginia. The small town was nestled among the coal mines of the region. Nearly all of his patients would be coal miners or family members of a miner. Bill would practice family medicine. His wife, a veterinarian, hoped to build a small-animal practice.
Liz McWherther, the forty-seven-year-old wife of a miner, came to see the young doctor. Over several weeks, she had developed a curious set of complaints. Each morning she woke with a dry mouth and slurred speech. She also noted blurred vision and difficulty urinating. Within a couple of hours of waking, she was completely free of any symptoms. These symptoms had been occurring each morning and going away by afternoon.
Liz had had a series of tests done by the previous physician, but none of these tests were abnormal. The physical examination by Dr. Hueston was entirely normal. She denied drinking alcoholic beverages or using illicit drugs. Hueston had briefly considered some unusual response to marijuana or other drugs that were prevalent in the area. Liz had not been down in the mines, nor did her husband bring back anything unusual into the house.
I have a split medical personality. On one hand, I am a pediatrician; I light up around babies and love to mess around with little kids. On the other hand, I am an Internist; I love complex problems and love talking to the elderly. But the one part of internal medicine which gives me perhaps the most joy is the opportunity to solve medical puzzles. Yes, pediatrics has puzzles in it too, but they are far more common in adults.
The term used for a medical puzzle-solver is diagnostician. It is always a great compliment to a physician to be called a great diagnostician. It means you are a good thinker, have a good store of facts, know how to organize your thoughts properly, and can see patterns in things you otherwise would never have found. It is the Sherlock Holmes, Lord Peter Whimsey, or Harry Dresden side of medicine. The diagnostician searches for clues, but especially searches where they are most often missed: right out in the open.
I am not sure anyone has called me a good diagnostician, but there are few things that give as much satisfaction in my job. It calls on my creativity, my memory, my mental organization, my ability to ask questions, my power of observation, and my ability to put all the disparate pieces together to form a cohesive whole. It’s not just coming up with an answer; it’s coming up with a plan.Continue reading…