We must ensure their relevance to contemporary patient care
By LONNY REISMAN, MD
It’s 1992 and disruptive technologies of the day are making headlines: AT&T releases the first color videophone; scientists start accessing the World Wide Web; Apple launches the PowerBook Duo.
In healthcare, with less fanfare, a Harvard physician named Dr. Burton “Bud” Rose converts his entire nephrology textbook onto a floppy disk, launching the clinical tool that would ultimately become UpToDate. Instead of flipping through voluminous medical reference texts, such as the Washington Manual, doctors could for the first time input keywords to find the clinical guidance they needed to make better treatment decisions.
The medical community embraced UpToDate’s unique ability to put knowledge at their fingertips. Today more than 1.7 million clinicians around the world use UpToDate to provide evidence-based patient care with confidence. For many, it along with other reference sources has become foundational to providing high quality medical care.
More than just an easy-to-use reference, UpToDate has gone on to improve patient outcomes, according to the Journal of Hospital Medicine.
In the new era of 21st century digital medicine, however, there are opportunities to go further in support of clinicians and patients. Reference tools must be powered by predictive and prescriptive analytics, be personalized to individual patient circumstances, and be integrated into clinician workflow. In some cases, clinicians may be unaware of which questions to ask of a computerized reference manual, or how to incorporate the nuances of an individual patient’s case into the general insights of a reference. Searching for heart failure treatment, for example, may be too broad a query and the resulting recommendations therefore may not provide optimal care for a specific patient’s unique medical circumstances. New digital health solutions that consider patients’ co-illnesses, contraindications, symptomatology, current treatment regimens, and hereditary risks are essential.
Recently, I have had some interesting conversations with doctors and medical students of Naturopathic Medicine. I am slowly getting involved in editing Wikipedia medicine articles, and I was approached by several proponents of Naturopathic Medicine, who were upset about the following phrases from the Wikipedia article on Naturopathy:
Naturopathic philosophy is based on a belief in vitalism and self-healing, and practitioners often prefer methods of treatment that are not compatible with evidence-based medicine. Naturopathic medicine is replete with pseudoscientific, ineffective, unethical, and possibly dangerous practices.
Of course, they felt this was unfair. In their mind, the Wikipedia article was “wrong” and needed to be fixed and they were frustrated by the tendency for Wikipedia editors to thwart their efforts to “fix” the article.
This put me in an uncomfortable position. I had the option of remaining entirely silent, or informing these followers of Naturopathy of several issues:
Here’s a doctor’s health tip for patients that I’ll bet you haven’t heard before.
If you’re a patient who walks into a hospital for an elective procedure of any kind–surgery, or a diagnostic test–and you find out that Joint Commission reviewers are on site, reschedule your procedure and leave. Come back another day, after the reviewers have left.
Why? Because every single person who works there will be paying a lot of attention to Joint Commission reviewers with their clipboards, and scant attention to you.
The Joint Commission has the power to decide whether the hospital deserves reaccreditation. Administrators, doctors, nurses, technicians, clerks, and janitors will be obsessed with the fear that the reviewers will see them doing something that the Joint Commission doesn’t consider a “best practice”, and that they’ll catch hell from their superiors.
For you as a patient, any idea that your clinical care and your medical records are private becomes a delusion when the Joint Commission is on site. Their reviewers are given complete access to all your medical records, and they may even come into the operating room while you’re having surgery without informing you ahead of time or asking your permission.
Perhaps physicians and nurses have an ethical duty to inform patients when the Joint Commission is on site conducting a review. Right now, that doesn’t happen. Does the patient have a right to know?
How did any private, nonprofit organization gain this kind of power? Why do American healthcare facilities pay the Joint Commission millions each year for the privilege of a voluntary accreditation review? It’s a classic tale of good intentions, designed to improve healthcare quality, that turned into a quagmire of unintended consequences and heavy-handed regulation.
American surgeons in 1918 started a system of reviewing hospitals because they were rightly concerned about serious differences in quality of hospital care and standards of practice. They wanted to evaluate hospitals objectively and motivate substandard ones to improve. In 1951, the American College of Surgeons joined forces with the American Medical Association, the American Hospital Association, and other corporate members to form the Joint Commission for Accreditation of Hospitals (JCAH).Continue reading…
Somewhat ironically, I returned from Manhattan that same day to a waiting email from a colleague, forwarding me a rather excoriating critique of integrative medicine on The Health Care Blog, and asking me for my opinion.
The juxtaposition, it turns out, was something other than happenstance. The Cleveland Clinic has recently introduced the use of herbal medicines as an option for its patients, generating considerable media attention.
Some of it, as in the case of the Katie Couric Show, is of the kinder, gentler variety. Some, like The Health Care Blog — is rather less so. Which is the right response?
One might argue, from the perspective of evidence based medicine, that harsh treatment is warranted for everything operating under the banner of “alternative” medicine, or any of the nomenclature alternative to “alternative” — such as complementary, holistic, traditional, or integrative.
One might argue, conversely, for a warm embrace from the perspective of patient-centered care, in which patient preference is a primary driver.
I tend to argue both ways, and land in the middle. I’ll elaborate.
I know it seems like the obvious choice, but I would not run a randomized clinical trial.
I have recently lamented the pernicious influence, within my domain of public health practice, of hyperbolic headlines proclaiming “this,” followed unfailingly by equally and oppositely hyperbolic headlines reactively proclaiming “that.”
But we are obligated to acknowledge that there are, generally, research studies underlying the headlines, however extreme the pop culture distortions of the actual findings. So to some extent, the problem originates before ever the headlines are a gleam in an editor’s eye, with our expectant anticipation of the next clinical trial, and the next, and the next.
By all means, bring on the clinical trials! They serve us well. They advance the human condition. I run a clinical research lab — my career is devoted to just such trials.
But still, I wouldn’t conduct one if my foot caught fire.
Of course, there is a very good case for running such a study, as many vitally important questions about the right response to a foot on fire are at present unanswered. What, for instance, would be the ideal volume of water? Should it be hard water, or soft? Fluoridated, or not? A controlled trial is very tempting to address each of these.
The vessel is even more vexing. What would be the best kind of bucket? What size should it be? What color should the bucket be, what composition, and what’s the ideal kind of handle? I think the variations here are the basis for an entire research career.
Perhaps the notion of running randomized, double-blind, controlled intervention trials to determine the right response to a foot on fire seems silly to you. But if so, you must be suggesting that science does not preclude sense.
A recent case taught me a lot about how people perceive their medicines.
I was trying to help a 92-year-old man get off some of his medicine. I can’t go into the details, but suffice to say, there was much opportunity to trim a long list of drugs, many of which were threatening his existence and impairing his quality of life.
As I was discussing stopping many of the meds, the patient said (with a quite sincere tone):
“You doctors these days just want us old people to go off and die.”
That was a zinger, a real punch in the gut. I was trying to do the opposite–allow him to live a longer and better life–but the patient perceived me as a mini-death panel.
I’ve been thinking a lot about this case. Why was this man “attached” to his meds? Why had he associated his longevity with chemicals that now threatened his existence?
The answer, I believe, is a knowledge gap. He, like many people, doctors included, fell into the trap of association and causation. He associated his health with his medicines; he overestimated their benefits. He thought the pills were keeping him alive. They were not. He lived despite his medicines.
What I tried to explain to this patient was that benefits from medicines do not continue indefinitely. Things change in the elderly, and, what is for younger patients may not be in the aged.
Take the case of preventing stroke in the elderly. Simple drugs, such as high blood pressure medicines and statins, may no longer offer a net benefit to the patient over the age of 80. Really. It is true.
Let me tell you about a recent commentary in the journal Evidence Based Medicine (from BMJ).
Dr Kit Byatt is a doctor in the UK who specializes in Geriatric Medicine. He wrote this refreshingly concise summaryoutlining four reasons why the medical community should reconsider its overenthusiastic views of stroke reduction in patients over the age of 80. In the title, Dr. Byatt asks whether we are being disingenuous to ourselves and to our elderly patients.
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.
Open publication adds to the flood of information already available to most doctors, placing a burden on them to search and filter it. IBM’s Watson is one famous attempt to approach the ideal where the doctor would be presented right at the point of care with exactly the information he or she needs to make a better decision. Elsewhere, I have reported on a proposal to help experts doctors filter and select the important information and provide it to their peers upon demand–a social networking approach to evidence-based medicine.
Not only published papers, but the data that led to those research results should be published online, to help researchers reproduce the results and build on them to make new discoveries. I report in an earlier article on this site about the work of Sage Bionetworks to get researchers to open their data. Of course, putting up raw data leaves many challenges: one has to be careful to deidentify it according to accepted standards. One has to explain the provenance of the data carefully: how it was collected and massaged (because data sets always require some culling and error-correction) so it can be understood and properly reused. Finally, combining different data sets is always difficult because they are collected under different conditions and with different assumptions.
We are asking doctors to help us study what access to all medical research would mean for their practice. To study the value of such access, we are providing physicians who participate in this Stanford University Public Access Study with eleven (11) months of complete access to virtually all medical journals, as well as to an evidence-based clinical decision-support service.
Participating physicians will have free, one-click access to this vast body of research on their computer or tablet, whenever and wherever they are online. The study is intended to inform current discussions and legislation on the state of public and professional access to federally funded medical research.
Demands on Participant: Participants must be a physician licensed to practice in the United States. Data will be collected on participants’ use of research, with selected participants asked to participate in a 30-minute confidential interview. As a control measure, participants are given an extra month of the evidence-based clinical decision-support service, either prior or following the eleven months of access to the research literature.
To learn more and/or to begin immediate participation (after providing informed consent) in the Public Access Study, follow this link: http://nihpublic.stanford.edu/.
The principal investigator of the Public Access Study is John Willinsky, Khosla Family Professor, Stanford University, Stanford CA; firstname.lastname@example.org.
Sir Muir Gray, of evidence-based medicine fame, is a man who speaks his mind – often in 140 characters or fewer. “Show me a paper by a management academic,” he Tweeted, “that has changed the way we deliver health services” [and, implicitly, improved patient outcomes].
Part of me agreed with him, but I’m married to a management academic (“Oops sorry, better man than me,” Muir backpedalled), who helped me rise to Muir’s challenge.
We kicked off with a paper almost every clinician has heard of:
Kaplan and Norton’s ‘balanced scorecard’, published in Harvard Business Review in 1992 and cited over 8000 times since . The scorecard was aimed at company directors who wanted some quick (and, one is tempted to suggest, dirty) metrics to monitor what their customers thought of them and where they should direct their efforts for the future. It has certainly changed practice (many healthcare organisations use it), but we were not overly sold on its transferability to the healthcare setting.