Imagine that the next time your doctor orders a round of tests, in addition to cholesterol and vitamin D, she also orders a genome sequence. It sounds like science fiction, but the day might come sooner than you think.
Precision medicine—in which each patient’s prevention and treatment decisions are tailored for them—has been a buzzword in the health care industry recently. President Barack Obama launched his Precision Medicine Initiative, and other countries have similar projects underway.
With concerns about the cost of health care, though, can we afford precision medicine?
In certain instances, precision medicine can actually save money. For example, if patients can be screened for drug hypersensitivity before being prescribed certain drugs, they won’t have to be treated later, which is better for patients and cuts down on costs. A similar approach works for choosing treatments.
“When you use a therapy to target only the individuals who will benefit, you avoid wasting drugs or other resources on people who you know won’t get any benefit, and who might actually be harmed,” said David Threadgill, Ph.D., professor and holder of the Tom and Jean McMullin Chair of Genetics at the Texas A&M Health Science Center College of Medicine and director of the Texas A&M Institute for Genome Sciences and Society.
Of course, it’s not quite that simple. “Whether the economics works out in favor of precision medicine depends on two things: the difficulty and the cost of finding the best candidates who will benefit from specific, tailored treatments,” said Robert L. Ohsfeldt, Ph.D., health economist and professor in the Department of Health Policy & Management at the Texas A&M School of Public Health. “You have to know a lot about the disease process and how individual characteristics—genetics and environmental factors like diet or exposure to toxins—mediate the treatment response.”
Criteria for Stage 3 of meaningful use of EHRs were released recently and there is lots of controversy, as would have been predicted. One set of recommendations that is raising eyebrows is around patient engagement.
Following on the Stage 2 measure of getting patients to view, download, and transmit their personal health data, the Office of the National Coordinator (ONC) has proposed an increase from five to 25 percent.
This is all a mouthful, and it’s striking and a bit misguided from two perspectives. First, this requires health care providers to present material to or interact with patients electronically in the name of patient engagement. But it is really mostly about shoveling uninspiring material at our patients that is redolent of highly technical jargon with minimal context, with the belief that it is somehow good for patients to be engaged in this way. The intent is admirable, but the execution flawed. In addition, it is not surprising that many providers have had challenges meeting the Stage 2 requirement that five percent of patients download their medical records. It seems akin to saying that this week’s book club selection is the text for advanced graduate study of quantum mechanics — and then wondering why no one shows up for the meeting.
Some define engagement in terms of how many times consumers or patients interact with informational websites or portals. Both insurers and providers do this. Once again, there is puzzlement over why consumers would choose to spend more time on sites such as BuzzFeed, Facebook and Yahoo, rather than intently study their health benefits or review their lab tests.
At Partners HealthCare Connected Health, our first generation interest in engagement came when we saw, reproducibly, that people who interact with connected health programs have consistently better health outcomes.
This brings up two salient points: The first is how finely we can measure engagement using connected health.
Study finds doctors must make great effort to provide patients more useful information to help them make medical choices
Patients faced with a choice of surgical options want to engage their physicians and take a more active role in decision-making, according to a study (abstract 567) released at Digestive Disease Week® (DDW) 2015. Further, those physicians must provide better support tools to help patients participate in the decision-making process. The study found that patients consult multiple sources (Internet, family, friends, doctors, etc.) and say that while doctors provide the most believable information, it was also the least helpful.
Evidence-based medicine has been called “cookbook medicine” by some of its more vocal critics. This implies that evil faceless organisations like Cochrane aim to turn all healthcare workers into mindless automatons who blindly follow dictums derived solely from scientific evidence. I hope it doesn’t surprise many in that this has never been the aim of Cochrane, or EBM in general, nor will it ever be. EBM, or EBP if you prefer the term ‘practice’ rather than the more vague ‘medicine’, is a belief system that rests on three pillars (cf. five in Islam). The EBM pillars are: 1) best available scientific evidence (i.e. the purview of Cochrane and yours truly), 2) clinical experience and 3) patient preferences and values. So, the main gist is that evidence doesn’t matter – no matter how scientific – if we don’t have a clinician at hand to interpret it for the benefit of a particular patient equipped with a particular set of values. For example, in a situation where two very similar patients have the same condition, one might wish to achieve speedy return to work whereas the other might rather avoid pain at all cost. The clinician would then use his or her judgment to identify the best course of treatment for both based on experience and what us science types have to offer. However, let us now leave the two pillars of clinical experience and patient preferences to be explored in future posts so that we can chew the first a bit more.
Now, the evidence bit in EBM is often understood to mean results of systematic reviews(a fancy type of research). Inasmuch as they offer an abstracted truth devoid of context (see my earlier post on mathematical ghosts) they still need to be interpreted for use in particular circumstances. This doesn’t always have to be done for every single patient by every single clinician separately. Think of the usefulness of reinventing the wheel for every drive. Often the thinking behind the interpretation and application of evidence can be written down and made use of by many. On a population level this means drafting guidelines. However, it is important to note that when scientific evidence is freely available one does not need to wait for formal committees to grow their beards long enough to formulate official guidelines. Especially when even supposedly professional guideline developers can do a really poor job (see previous post by Margot Joosen). In fact, all informed people and communities should participate in making sense of and advocating for the use of research to back up health decisions. In the end it affects the quality of care they receive.
1. Always ask “why?” This seems obvious, but even in this modern era, many patients take it as an article of faith that a doctor’s recommendation is thoughtful and well informed. It may well be; but on any given occasion, it could also be a knee-jerk — born of prevailing tendencies, distractions, and want of time. The question “why” is easily addressed by those who have already thought it over; and is a necessary reality check for those of us who have not.
2. Always ask “what else?” In the case of the fluoroquinolone syndrome, it’s bad enough when a fluoroquinolone was a genuinely thoughtful, warranted choice. It’s downright tragic when a much-less-potentially-toxic, narrow spectrum antibiotic would have served at least as well. “What else?” is a reminder that there is generally more than one way to test or treat, and the one we want is the BEST of them: most likely to help, least likely to hurt. It prods our providers to do the extra work of getting us there when we remind them we want to know the options, and comparison shop them.
3. Always ask “then what?” This would certainly defend against a screening colonoscopy in an 85 year old with congestive heart failure. If I have this test, then what? The answer would have to be: We can find potential cancer early, and fix it now so it doesn’t cause you trouble in ten years. That would invite all concerned to revisit the relevance of that “help” ten years in the future of someone exceedingly unlikely to live that long.
At the conclusion of a recent doctor visit, he gave me his cell phone number saying, “Call me anytime if you need anything or have questions.”
In disbelief, I wondered if this was a generational thing – and whether physicians in their late thirties had now ‘gone digital’.
My only other data point was our family pediatrician, who is also in her late thirties. Our experience with her dates back nearly seven years when my wife and I were expecting twins. A few pediatricians we met with mentioned their willingness to correspond with patients’ families via email as a convenience to parents. The pediatrician we ultimately selected wasn’t connected with patients outside of the office at that time, but now will exchange emails.
A predictable irony of the never-ending Affordable Care Act (ACA) debate is that the one provision that the Republicans should be attacking — free “checkups” for everyone — is one of the few provisions they aren’t attacking. Why should they attack them? Simple — checkups, on balance, are worthless. Why provide a 100 percent subsidy for a worthless good? Where is the GOP when you need it?
How worthless are checkups? Dr. Ezekiel Emanuel — one of the architects of the ACA and its “free” checkup centerpiece — recently recommended not getting them. As if “free” is not cheap enough, the ACA also pushes ubiquitous corporate wellness programs, which often pay employees to get checkups — or fine them if they don’t. This policy establishes a de facto negative price for millions of workers, making checkups the only worthless service on earth that one could get paid to utilize.
Those economics of a “negative price” trump Dr. Emanuel’s advice, and have made preventive care the fastest-growing component of employer health spending. Though hard statistics on checkups themselves are elusive, Dr. Emanuel estimates about 45-millon adult checkups are conducted each year, the equivalent of roughly 8 percent of America’s PCPs doing nothing but checkups, a curious use of their time when experts say the country could soon face a shortage of PCPs.
Shortage or not, subsidies and incentives might make economic sense if checkups improved health. However, when generally healthy adults go to the doctor for no reason, just the opposite is true: the Journal of the American Medical Association (JAMA) supports Dr. Emanuel assertion that annual checkups for asymptomatic adults are at best worthless, saying that additional checkups are “not associated with lower rates of mortality” but “may be associated with more diagnoses and more drug treatment.”
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The solution to this orgy of overscreening and overdoctoring is remarkably simple: remove the ACA provision that makes annual checkups automatically immune from deductibles and copays; if they are going to be free at all, it should only be every few years. The proposal could still allow employers to override this provision — and even to attach money (incentives and penalties) to checkups — if they are willing to summarize the above-cited clinical findings for their employees.
If the only way they can continue the subsidy is by summarizing the literature, corporate human resources departments would predictably and immediately curtail this expensive corporate medical campaign. That would free up PCP time to work with patients who actually need medical care, while reducing counterproductive and costly healthcare utilization by those who do not.
People who dismiss their symptoms as trivial or worry about wasting the doctor’s time may decide against going to their GP with red-flag cancer warning symptoms, according to a Cancer Research UK study* published in the British Journal of General Practice(link is external)today.
“Many of the people we interviewed had red flag symptoms but felt that these were trivial and didn’t need medical attention, particularly if they were painless or intermittent.” – Dr Katriina Whitaker
Others might decide not to get possible cancer symptoms checked out because they fear a cancer diagnosis, they adopt a stiff upper lip, they lack confidence in the healthcare system, or they think their problem is down to ageing.
Researchers in London and Hull** looked at how people who experience possible cancer symptoms decide whether or not to seek medical help. They sent out a health survey that was completed by more than 1,700 people, aged 50 and over, from three London GP practices.
The survey specifically did not mention cancer, but incorporated a list of 17 symptoms including 10 cancer ‘alarm’ warning signs, such as persistent cough or hoarseness, unexplained lump, persistent change in bowel or bladder habits, and a sore that does not heal.***
More than 900 people reported having at least one alarm symptom during the past three months. Researchers carried out in-depth interviews with almost 50 of them, almost half (45 per cent) of whom had not seen their GP about their symptoms. ****
One woman with persistent abdominal pain did not go for a recommended test. She said: “At times I thought it was bad … but when it kind of fades away, you know, it doesn’t seem worth pursuing really.” A man, who experienced a persistent change in bladder habits, said: “You’ve just got to get on with it. And if you go to the doctor too much, it’s seen as a sign of weakness or that you are not strong enough to manage things on your own.”
Dr Katriina Whitaker, a senior research fellow at University College London during the study, said: “Many of the people we interviewed had red flag symptoms but felt that these were trivial and didn’t need medical attention, particularly if they were painless or intermittent.
“Others felt that they shouldn’t make a fuss or waste valuable NHS resources. The stiff-upper-lip stoicism of some who decided not to go to their doctor was alarming because they put up with often debilitating symptoms. Some people made the decision to get symptoms checked out after seeing a cancer awareness campaign or being encouraged to do so by family or friends – this seemed to almost legitimise their symptoms as important.”
Reasons people gave for deciding to seek help included symptoms not going away, instinct that something was not right, and awareness or fear that they might have cancer. A man with an unexplained throat lump said: “But always at the back of your mind you’ve always got the fear of cancer …….. well it’s best to check just in case.” However, fear also made some people decide not to check out symptoms, or if symptoms did persist some people began to think they were normal for them.
Some people waited for another reason to visit their GP and mentioned the cancer alarm symptom then. Others said they would rather use an emergency route, such as going straight to A and E, than wait to see a specialist after being referred by their GP.
Dr Richard Roope, Cancer Research UK’s GP expert, said: “The advice we give is: if in doubt, check it out – this would not be wasting your GP’s time. Often your symptoms won’t be caused by cancer, but if they are, the quicker the diagnosis, the better the outcome. Seeking prompt advice from your GP about symptoms, either on the phone or during an appointment, could be a life-saver, whatever your age. And the good news is that more than half of all patients diagnosed with cancer now survive for more than 10 years.”
Next time my physician urges a screening, I’ll wonder if it is because of his concern for my health (most likely- knowing my physician) or his corporation’s interest in profit…
As this article outlines is that physicians in corporations are often
English: A doctor examines a female patient. (Photo credit: Wikipedia)
thought more highly of business folks until I started working for them. I thought CEOs and boards of directors of companies had a vision, whether to maximize shareholder profit, or to produce a stellar product or provide a singular service, etc. Once the vision was elucidated, everyone worked together like a team to make it happen.
Then I became employed by a large corporation as a family physician to provide medical care. And it’s been one eye opening experience after another ever since. To me, it’s quite simple. The vision of a medical practice should be to provide good medical care while being cost conscious, and maintaining strong patient satisfaction. That’s how all the money gets generated, right? The patient pays his/her premium, part of which gets funneled to our large corporation, who is then tasked to provide care for that patient. How is care provided to that patient? By having a doctor see, talk to, examine and treat that said patient.
OK. So we all know that it’s not quite that simple. Enter primary care 2014, the world of risk adjustment factor (RAF) scores (which entail the corporation getting paid more for sicker patients), electronic health records (EHR), and quality metric incentive payments (the corporation gets more money from insurance companies by meeting certain goals in screening, like colonoscopies, mammograms, etc.). Now health care has become more complicated. But it’s still all based on that interaction we physicians have with our patients. We can’t meet quality metric goals if we don’t see the patients, we can’t determine if they are sicker and therefore require more funds to care for if we don’t see them, and we can’t use EHR if we don’t see the patient. There’s just a bunch of road blocks and distractions added in….
Are doctors confused by statistics? A new book by one prominent statistician says they are – and that this makes it hard for patients to make informed decisions about treatment.
In 1992, shortly after Gerd Gigerenzer moved to Chicago, he took his six-year-old daughter to the dentist. She didn’t have toothache, but he thought it was about time she got acquainted with the routine of sitting in the big reclining chair and being prodded with pointy objects.
The clinic had other ideas. “The dentist wanted to X-ray her,” Gigerenzer recalls. “I told first the nurse, and then him, that she had no pains and I wanted him to do a clinical examination, not an X-ray.”
These words went down as well as a gulp of dental mouthwash. The dentist argued that he might miss something if he didn’t perform an X-ray, and Gigerenzer would be responsible.
But the advice of the US Food and Drug Administration is not to use X-rays to screen for problems before a regular examination. Gigerenzer asked him: “Could you please tell me what’s known about the potential harms of dental X-rays for children? For instance, thyroid and brain cancer? Or give me a reference so I can check the evidence?”
The problem of pain, from the viewpoint of British novelist and theologian C. S. Lewis, is how to reconcile the reality of suffering with belief in a just and benevolent God.
The American physician’s problem with pain is less cosmic and more concrete. For physicians today in nearly every specialty, the problem of pain is how to treat it responsibly, stay on the good side of the Drug Enforcement Administration (DEA), and still score high marks in patient satisfaction surveys.
If a physician recommends conservative treatment measures for pain–such as ibuprofen and physical therapy–the patient may be unhappy with the treatment plan. If the physician prescribes controlled drugs too readily, he or she may come under fire for irresponsible prescription practices that addict patients to powerful pain medications such as Vicodin and OxyContin.
Writing in Science, the chair of the Presidential Commission for the Study of Bioethical Issues notes it is increasingly common for physicians and medical researchers to discover a disease that was not the original target of a medical test or screening.
Amy Guttman Ph.D. notes these surprise clinical test results are called incidental and secondary findings. Guttman explains the surprise discovery of an unexpected illness from screening and similar tests is called an ‘incidental’ finding. Guttman adds when clinicians deliberately seek to discover a second or third disease in addition to the primary target, these results are called ‘secondary’ findings.
Guttman, who is the president of the University of Pennsylvania, writes (and we quote): ‘Improved technologies are making incidental and secondary findings increasingly common. They are becoming a growing certainty in clinical practice as well as in the distinct contexts of research and direct-to-consumer testing’ (end of quote). For example, Guttman notes an array of unexpected clinical findings may be generated by new CT scans intended to detect lung cancer in heavy smokers. The increased screening will occur because of recent recommendations from the U.S. Preventive Services Task Force, which we discussed in last week’s podcast.
Guttman writes before CT scans or other medical tests, clinicians should alert patients about the possibility of surprise findings regardless whether screening deliberately seeks (or accidentally finds) new, unexpected illnesses.
Guttman notes while some persons will ask a physician to tell them about whatever clinical tests discover, some patients do not want to learn about incidental or secondary findings.
As a result, the Presidential Bioethics Commission recommends physicians and medical practitioners need to know a patient’s health priorities and tolerance to manage surprising results prior to clinical testing. Guttman writes (and we quote) ‘A patient who does not wish to learn about information related to the primary purpose of the test should not undergo the test. If a patient wishes to opt out of receiving incidental or secondary findings that are clinically significant and actionable, then clinicians should exercise their discretion whether to proceed with testing’ (end of quote).
Guttman notes health care providers should explain both the risks and rewards of finding unexpected illnesses that can occur from a new generation of sophisticated clinical tests, such as human genome screenings. While false positive findings are among the risks, Guttman explains the rewards include the detection of diseases and illness that could be clinically actionable.
In terms of biomedical ethics, Guttman concludes (and we quote):’ In keeping with shared decision-making, clinicians live up to their highest calling when they discuss how they will handle incidental findings with their patients’ (end of quote). While the Presidential Bioethics Commission provides more specific recommendations in their report, their overall intent is to improve patient-provider disclosure and communication as well as help patients anticipate the possibility of unexpected findings from routine testing.
The Commission’s report is available at bioethics.gov.
Meanwhile, a link to a website that explains some of the ethical issues associated with patient and provider health decision making (from Beth Israel Medical Center) is available in the ‘specific conditions’ section of MedlinePlus.gov’s medical ethics health topic page.
Similarly, a link to a website that explains some of the ethical issues associated with patient and provider treatment decisions (also from Beth Israel Medical Center) can be found in the ‘specific conditions’ section of MedlinePlus.gov’s medical ethics health topic page.
MedlinePlus.gov’s medical ethics health topic page also provides links to the latest pertinent journal research articles, which are available in the ‘journal articles’ section. You can sign up to receive updates about medical ethics as they become available on MedlinePlus.gov.
To find MedlinePlus.gov’s medical ethics health topic page type ‘medical ethics’ in the search box on MedlinePlus.gov’s home page. Then, click on ‘medical ethics (National Library of Medicine).’ MedlinePlus.gov additionally contains a health topic page on talking with your doctor, which provides tips to enhance provider and patient communication.
Two thoughts on disparities highlighted in the article
What about folks who do not have the background and access to resources to self diagnose? In all countries, “developed” (as USA, most of Europe) and “developing” (asmuch of Africa, parts of Asia…)
Is it ethical for some health information to be physician/research access only?
By 1997, those irregular heartbeats became common, leading to “hundreds and hundreds” of serious episodes, capable of causing death. She eventually received an ICD, an implanted cardioverter-defibrillator, which would shock her heart back into the proper rhythm.
Goodsell began studying her condition, drawing back on her own education. While she has no medical degree, Goodsell had been a pre-med student at UC San Diego, where she met Charles, who was studying chemistry. She dropped out after falling in love with nature during a trip to Peru.
Looking for that unifying theory, Goodsell delved into genomics, searching for mutations that could encompass her symptoms. She found it with a gene called LMNA, that codes for making proteins called lamins that stabilize cells. Defects in these proteins can cause a form of Charcot-Marie-Tooth disease, damaging nerves in the extremities and causing muscle wasting, including in the hands.
Symptom after symptom checked with the mutation. But to be sure, she needed a genetic test, and her Mayo doctors resisted.
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Taking the research into self-therapy, Goodsell researched risk factors associated with the disease, examining what goes on at a molecular level. She changed her diet: Out went sugars, out went gluten and any food with additives. And out went a beloved snack.
“I used to eat bowls of jalapeño peppers. I discontinued.”
But she added certain fats she had previously avoided, such as omega-3 fatty acids and nuts, which are rich in fats.
“Cell membranes are fat, and we need fat — good fat,” she said. “I was advised to start eating fat.”
Goodsell said her symptoms improved. Control over her hands improved enough to allow her to eat with chopsticks and to resume kitesurfing.
Goodsell’s doctor wrote up her case history, listing her as co-author “because he said I had done the lion’s share of the work.” The study is to be presented at an upcoming meeting of the Heart Rhythm Society.
The Rise of the e-Patient: Slideshow (ScienceRoll)“It’s always good to see the trends about the growing number and importance of e-patients. Lee Rainie, director of the Pew Internet Project, presented this wonderful overview of the Project’s health findings at Providence St. Joseph Medical Center in Burbank, CA, on January 12.”
A hospital in Staffordshire is set to become the first in Europe where doctors consult with their patients via Skype
A hospital is set to become the first in Europe to tackle waiting times by getting overworked doctors to consult with their patients via Skype.
Managers at the University Hospital of North Staffordshire claim using the online video calling service could reduce outpatient appointments by up to 35 per cent.
They argue that using Skype will help free up consultants’ time and car parking spaces – while also helping patients who are unable to take time off work.
If approved, they would become the first UK hospital to use Skype to consult with patients.
The proposals, by Staffordshire’s biggest hospital, also include doctors treating patients via email consultations……..
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“The key issue for doctors will be to recognise when this mode of consultation is not sufficient to properly assess the patient and address the problem, and to arrange a face-to-face consultation instead.”
As part of the Time To Talk campaign, NCCAM has developed a packet of helpful materials to help you begin a dialogue with your health care providers. Order your packet online or call 1-888-644-6226 and use reference code D393.
Each packet contains:
Backgrounder: The backgrounder provides information about the importance of health care providers and their patients talking about complementary health practices.Download PDF
TELL tip sheet: This sheet provides tips for talking with health care providers.Download PDF
Patient wallet card: This card will help to keep track of all medications, including dietary supplements and other complementary health products, and will be a handy reference during visits to your health care provider.Download PDF
Journalists: Sound bites with Dr. Montori are available in the downloads.
Shared decision-making is a collaborative process that allows patients and their clinicians to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences.
In 2013, the American College of Cardiology and the American Heart Association issued new cholesterol guidelines, replacing previous guidelines that had been in place for more than a decade. The new guidelines recommend that caregivers prescribe statins to healthy patients if their 10-year cardiovascular risk is 7.5 percent or higher.
“The new cholesterol guidelines are a major improvement from the old ones, which lacked scientific rigor,” says primary author Victor Montori, M.D., Mayo Clinic endocrinologist and lead researcher in the Knowledge and Evaluation Research Unit. “The new guidelines are based upon calculating a patient’s 10-year cardiovascular risk and prescribing proven cholesterol-lowering drugs — statins — if that risk is high.”
However, Dr. Montori cautions that the risk threshold established by the guideline panel is somewhat arbitrary. Instead he recommends that patients and their clinicians use a decision-making tool to discuss the risks and benefits of treatment with statins.
“Rather than routinely prescribing statins to the millions of adults who have at least a 7.5 percent risk of having a heart attack or stroke within 10 years, there is an opportunity for clinicians and patients to discuss the potential benefits, harm and burdens of statins in order to arrive at a choice that reflects the existing research and the values and context of each patient,” he says.
“We’re creating a much more sophisticated, patient-centered practice of medicine in which we move the decision-making from the scientist to the patient who is going to experience the consequences of these treatments and the burdens of these interventions,” Dr. Montori explains. “Decision-making tools can democratize this approach and put it in the hands of millions of Americans who have their own goals front and center in the decision-making process.”
Additional authors of the commentary include Henry Ting, M.D., and Juan Pablo Brito Campana, M.B.B.S., both of Mayo Clinic.
Very controversial, this posting has 113 comments as of Feb 4, 2014.
Two (or more! ) sides to this.
On a personal level, my medical record very boldly on the first page states two conditions
— Anxiety/Depression (have not needed medication for these conditions in 5 years)
— High Cholesterol ( have disputed the doctor on this, based on how I have read the scientific literature)
So, yes…I feel profiled!
Yet, the doctor is doing the best he can. He can only see patients for 15 minutes. His electronic records are
basically, well, dictated by the group he is in.
On another note, just as I am not defined by my job or resume…
I am also not defined by my medical record!
Ever felt misjudged by a doctor? Or treated unfairly by a clinic or hospital? You may be a victim of patient profiling.
Patient profiling is the practice of regarding particular patients as more likely to have certain behaviors or illnesses based on their appearance, race, gender, financial status, or other observable characteristics. Profiling disproportionately impacts patients with chronic pain, mental illness, the uninsured, and patients of color. Like racial profiling by police, patient profiling by physicians is more common than you think.
We rely on doctors to first do no harm–to safeguard our health–but profiling patients often leads to improper medical care, and distrust of physicians and the health care system, with potential lifelong consequences.
For the first time, people share their stories:
I was once denied pain meds after a fall off a 10-foot porch by the same doc who gave my pretty female friend pain meds after getting two stitches in her finger. I felt like my appearance had something to do with it.” ~ Jay Snider
Most children get their health care from a primary care provider, known as a PCP, but when there are signs or symptoms of a more serious illness, the PCP often refer kids to a specialist.
According to this month’s poll, it’s a common occurrence. Among the 1,232 parents surveyed in this poll, 46 percent report that at least one of their children has been referred to a specialist.
But when asked about the process of getting specialist care for their child, parents had a wide range of views, says Sarah J. Clark, M.P.H. , associate director of the National Poll on Children’s Health and associate research scientist in the University of Michigan Department of Pediatrics.
Parents are divided over who is responsible for choosing the specialist: 52 percent say the PCP and 48 percent say the parent. They also differed in who should verify insurance coverage: 55 percent say the PCP and 45 percent say the parent.
Forty percent of parents say the PCP should make sure the wait time isn’t too long for a specialist appointment, but 60 percent say that’s the parents’ responsibility.
“This poll shows a wide range of views about who is supposed to do what, so it’s not unexpected that sometimes the process doesn’t work well,” says Clark. “If a referral is delayed or it doesn’t happen at all, a child’s health can be put at risk.”
The poll also found that parents of children with Medicaid insurance coverage are more likely than parents of privately-insured children to say PCPs should be responsible for choosing the specialist, calling to set up the appointment, and verifying that insurance will cover the specialist care. Clark says this indicates that PCPs should understand that their Medicaid patients may have different expectations about their roles.
Parents also were asked to rank the importance of different characteristics of specialists, and rated the following as very important:
knowing how to take care of the child’s specific condition (89%)
having training in pediatrics (80%)
being affiliated with a highly-rated hospital (62%)
being involved in research so child has access to latest treatment (50%)
appointment time convenient for the family schedule (43%)
drive time to the specialist (38%)
other parents recommending the specialist (38%)
“For a parent, hearing that a child needs to see a specialist is often cause for concern. Confusion about their responsibilities for arranging specialty care can add to parents’ anxiety,” says Clark, who also is associate director of the Child Health Evaluation and Research (CHEAR) Unit.
“Primary care providers cannot assume that parents understand their responsibilities around making specialty appointments. Clear communication — ideally, with instructions written in plain language — will help parents ensure their kids get the care they need.”
Website: Check out the Poll’s website: MottNPCH.org. You can search and browse over 80 NPCH Reports, suggest topics for future polls, share your opinion in a quick poll, and view information on popular topics. The National Poll on Children’s Health team welcomes feedback on the website, including features you’d like to see added. To share feedback, e-mailNPCH@med.umich.edu.
Choosing Wisely® aims to promote conversations between physicians and patients by helping patients choose care that is:
Supported by evidence
Not duplicative of other tests or procedures already received
Free from harm
Truly necessary
In response to this challenge, national organizations representing medical specialists have been asked to “choose wisely” by identifying five tests or procedures commonly used in their field, whose necessity should be questioned and discussed. The resulting lists of “Five Things Physicians and Patients Should Question” will spark discussion about the need—or lack thereof—for many frequently ordered tests or treatments.
Recognizing that patients need better information about what care they truly need to have these conversations with their physicians, Consumer Reports is developing patient-friendly materials and is working with consumer groups to disseminate them widely.
Choosing Wisely recommendations should not be used to establish coverage decisions or exclusions. Rather, they are meant to spur conversation about what is appropriate and necessary treatment. As each patient situation is unique, physicians and patients should use the recommendations as guidelines to determine an appropriate treatment plan together.
United States specialty societies representing more than 500,000 physicians developed lists of Five Things Physicians and Patients Should Question in recognition of the importance of physician and patient conversations to improve care and eliminate unnecessary tests and procedures.
These lists represent specific, evidence-based recommendations physicians and patients should discuss to help make wise decisions about the most appropriate care based on their individual situation. Each list provides information on when tests and procedures may be appropriate, as well as the methodology used in its creation.
Choosing Wisely recommendations should not be used to establish coverage decisions or exclusions. Rather, they are meant to spur conversation about what is appropriate and necessary treatment. As each patient situation is unique, physicians and patients should use the recommendations as guidelines to determine an appropriate treatment plan together.
In collaboration with the societies, Consumer Reports has created resources for consumers and physicians to engage in these important conversations about the overuse of medical tests and procedures that provide little benefit and in some cases harm.
Specialty Society Lists of Five Things Physicians and Patients Should Question (for physicians):
Something we have been hearing a lot of lately is how this is the moment for the healthcare consumer (see, Bloomberg Review video, MedCity Article, Forbes article on trends to be excited about). Basically, people are noting that EMR’s and patient portals, the proliferation of health and wellness related mobile apps, and greater transparency across the system, will all lead to a new age of health care where patients have the information and tools to savvily navigate a streamlined healthcare delivery system oiled by customer reviews, online tools, and digital gadgets. Think Yelp and MenuPages meets healthcare.
While all of the trends listed above are exciting leaps forward, not enough attention is being paid to the patient’s needs at the point of care. Research on patient activation andshared or participatory decision making all points to the following:
Empowered patients who actively participate in decisions about their health and treatment options are more likely to be compliant with their medications, make less risky and more cost effective decisions, and are more confident in the management of their health outcomes.
For the purposes of this blog, I am focusing on the concept of a patient as an active participant at the point of care. From my own personal experience, it seems that “doctor knows best” remains the dominant paradigm. Instead of having a conversation about treatment options, the pros and cons of alternatives, variations in costs and side affects, I am more often than not prescribed a medication or treatment option and sent about my day. If I feel like knowing more about the medication (that I have already agreed to take), I usually conduct research after the appointment.
I realize that my blog has been littered with depressing musings on healthcare lately, and so I thought I’d offer up one very positive and “actionable” suggestion for all you patients out there. In the midst of a broken system where your doctor is being pressured to spend more time with a computer than listening and examining you, where health insurance rates and co-pays are sky-rocketing, and where 1 in 5 patients have the wrong diagnosis… There is one “magic” question that you should be asking your physician(s):
“What else could this be?”
This very simple question about your condition/complaint can be extremely enlightening. Physicians are trained to develop extensive “differential diagnoses” (a list of all possible explanations for a set of signs and symptoms) but rarely have time to think past possibilities 1 through 3. That’s one of the reasons why so many patients have the wrong diagnosis – which is both costly in terms of medical bills, time, and pain and suffering.
There is a risk in asking this question – you don’t want to be over-tested for conditions that you are unlikely to have, of course. But I maintain that the cost/risk of living with the wrong diagnosis far exceeds the risk of additional testing to confirm the correct diagnosis. So my advice to patients is to keep this very important question in mind when you see your doctor for a new concern.
A patient having his blood pressure taken by a physician. (Photo credit: Wikipedia)
From the 21 October 2013 KevinMD.com article by Kathy Neider, Physician
Over one year ago my office implemented an EHR (electronic health record). I’ve not done a note on paper since.
Last week, a Transition of Care (TOC) document was placed on my desk with a sticky note stating: “Dr. Nieder please fill out this form so we can bill a 99496 for your visit with Mrs. Jones yesterday.”
I pick up two sheets of paper with multiple questions including:
home health/community services discussion/referrals: (list)
establishment or re-establishment of referral orders for community resources: (list)
discussion with other health care providers: (list)
assessment and support of treatment regimen adherence: (discussion documentation)
appointments coordinated with: (list)
education for self-management, independent living and activities of daily living: (discussion documentation)
Please remember, I am now on an EHR. So I am expected to document electronically first then manually fill out forms. I have no discharge summary yet from the hospital. The medications when she left the hospital state “resume pre-admission meds.” In order for me to list what tests she had I log in to the hospital portal and look them all up. Some of them have been scanned into my EHR, some not. She had a straight forward admission for a small bowel obstruction. She declined to keep the surgeon’s appointment as she was told there was nothing he could do for her.
A TOC visit is paid at a higher rate than other visits if the patient does not return to the hospital in the following 30 days. Hence, we hold the billing until that time. My understanding of the purpose of this new code is to improve coordination of care as a patient transitions from the hospital to home. Coordination would imply that there are other individuals involved and thus there is improved communication between us.
However my staff and I bear the brunt of gathering information (which is what we normally do anyway, so I guess it’s nice because now we get paid for it).
At what point will it become incumbent upon the hospital to send me the necessary information for treating the patient now that he/she is home again? How does it follow that improving care means the primary care doctor fills out even more forms, ultimately reducing the time spent with the patient?
The form will not keep the patient out of the hospital. Communication can keep the patient out of the hospital. True coordination of care might keep the patient out of the hospital. More busy work for the patient’s primary care doctor will not. Since the order of the day is using hospitalists, it is imperative that we improve our communication systems at the time of discharge and before the patient is seen again in the primary care office. Systems must stop thinking that one more form is going to save the patient. Especially another form on my back.
few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”
And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).
They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.
Nor were they related to social media, ehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.
No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:
Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.
These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.
These innovations point the way to much better academic conferences. Here’s why:
The power of patient presence
I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of theSociety of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)
I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.
How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.
But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.
In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.
Physicians love being liked. They also love doing their jobs well. With other incentives, such as monetary returns, dwindling, the elation we get from satisfying a patient as well as providing them good care is what still makes being a doctor special. But is keeping patients satisfied and delivering high-quality care the same thing? And more important, can patients tell if they are getting good care?
Policymakers certainly think so. In fact, under the Affordable Care Act, Medicare, and Medicaid hospital reimbursements are now being tied to patient satisfaction numbers.
But the association between patient satisfaction and the quality of care is far from straightforward, and its validity as a measure of quality is unclear.
In fact, a study published in April and conducted by surgeons at the Johns Hopkins School of Medicine showed that patient satisfaction was not related to the quality of surgical care. And a 2006 study found that patients’ perception of their care had no relationship to the actual technical quality of care they received. Furthermore, a 2012 UC Davis study found that patients with higher satisfaction scores are likely to have more physician visits, longer hospital stays and higher mortality. All this data may indicate that patients are equating more care with better care.
Although patients and their physicians generally have similar goals, that is not always the case. As a resident, who is not paid on a per-service basis, I have no incentive to order extra testing or additional procedures for my patients if they’re not warranted. But one study found that physicians who are paid on a fee-for-service basis and therefore have an incentive to deliver services — needed or not — are more likely to deliver these services (such as an MRI for routine back pain).
On top of that, as another study found, they also are more liked by their patients. It is no wonder then that the number of patients with back pain, one of the most common reasons for physician visits, are increasingly being overmanaged with MRIs and narcotic pain medications.
Consumer satisfaction is a metric that has been used extensively in other industries, and its increasing integration in healthcare may represent a desire to model medicine on industries that lead in efficiency, such as the technology, automobile or airline industries. But healthcare remains fundamentally different.
Consider Medicare’s initiative to have hospitals publicly report their patient outcomes and satisfaction data and have consumers compare them a la computers or SUVs. Of the 13 teaching hospitals within five miles of my apartment, the relationship between the quality of care and patient satisfaction was unclear. Within these hospitals, hospital mortality outcomes did not correlate with satisfaction ratings.
I’m a physician and I had difficulty making sense of the data, so how can we expect everyday people to use them in a meaningful way? Would they prefer a place where they or their relatives are likely to live longer, have a lower risk of readmission and have fewer infections, or a place where their pain would be better managed, their nurses more responsive and their bathrooms cleaner? Although ideally hospitals would score highly in both sets of measures, data suggest that is not necessarily always the case.
Patient visits can sometimes be like family dinners. They are probably not the best occasions to talk about Dad’s smoking habit or Mom’s Xanax addiction. But to maintain shared decision-making, clear and honest communication is vital. And in critical situations, most data suggests that patients want their physicians to be upfront about bleak issues such as life expectancy.
Yet a 2012 study by investigators in the Dana-Farber Cancer Institute found that patients who were better informed about the grim nature of their cancer and the goals of their treatment were less satisfied with their physicians. Such findings put a physician in a quandary: a more informed patient or a more satisfied one?
Emphasizing patient satisfaction and offering incentives to hospitals and physicians to keep their patients satisfied are laudable. But trying to transform patient satisfaction into a catch-all quality metric may not be the right approach. What is really needed is for physicians to take the time to help patients identify the things they need, not just what they want.
Greetings from the National Library of Medicine and MedlinePlus.gov
Regards to all our listeners!
I’m Rob Logan, Ph.D. senior staff National Library of Medicine for Donald Lindberg, M.D, the Director of the U.S. National Library of Medicine.
Here is what’s new this week in MedlinePlus.
The extent of caregivers’ assistance to patients — and suggested strategies for physicians to assist caregivers — are detailed in an interesting commentary recently published in the Journal of the American Medical Association.
The commentary’s author (who is a professor at Harvard Medical School) explains about 42 million Americans are caregivers and they assist patients for an average of 20 hours a week. Muriel Gillick M.D. reports the majority of caregivers are middle-aged women caring for aging parents.
Dr. Gillick notes caregivers often assist patients with daily living activities, such as shopping, cooking, bathing, and dressing. However, Dr. Gillick writes (and we quote) “Nearly half of all caregivers report responsibility for complex medical tasks that often are the province of a professional nurse or trained technician’ (end of quote).
Dr. Gillick finds caregivers report they are responsible for clinical activities including: diet adherence, wound care, treating pressure ulcers, providing medications and intravenous fluids, as well as operating medical equipment.
Dr. Gillick notes the recipients of caregiving are likely to be seniors in the last stages of their life. In the year before death, Dr. Gillick explains only 17 percent of Americans are without a disability while about 22 percent have a persistent severe disability. She reports the largest groups of caregiver-dependent adults include seniors who are frail or have advanced dementia. Dr. Gillick notes about 28 percent of Americans are frail and 14 percent have advanced dementia in their last year of life.
Dr. Gillick adds patients who are frail or have dementia often cannot participate in the management of their care, which necessitates a caregiver’s involvement. Dr. Gillick writes (and we quote): ‘If (end of life) medical care is to be patient centered, reflecting the values (patients) no longer have the cognitive capacity to articulate, clinicians must rely on surrogates to guide them. Yet, few programs caring for patients with dementia (or frailty) regularly incorporate caregivers in every phase of care’ (end of quote).
To improve assistance to caregivers, Dr. Gillick suggests physicians need to better explain a patient’s underlying health condition as well as work with caregivers to prioritize a patient’s health care goals.
Dr. Gillick adds caregivers should be encouraged to provide input about a patient’s surroundings as well as more fully participate in health care planning in a partnership with attending physicians.
Dr. Gillick notes caregivers are especially helpful in creating a continuity of patient care within different settings. She writes (and we quote): ‘In the complex US health care system, in which patients are cared for in the home, the physician’s office, the hospital, and the skilled nursing facility, the most carefully thought-out plan of care will prove useless unless its details can be transmitted across sites’ (end of quote).
Dr. Gillick concludes physicians as well as health care organizations need to provide more educational support to help caregivers.
Meanwhile, MedlinePlus.gov’s caregivers health topic page provides comprehensive information about caregiving’s medical and emotional challenges. For example, a helpful website from the American Academy of Family Physicians (available in the ‘start here’ section) helps caregivers maintain their health and wellness.
A similar website that addresses overcoming caregiver burnout (from the American Heart Association) can be found in the ‘coping’ section of MedlinePlus.gov’s caregivers health topic page.
In addition, there are special sections loaded with tips to provide caregiving to seniors as well as women and children within MedlinePlus.gov’s caregivers health topic page.
MedlinePlus.gov’s caregivers health topic page also provides links to the latest pertinent journal research articles, which are available in the ‘journal articles’ section. Links to clinical trials that may be occurring in your area are available in the ‘clinical trials’ section. You can sign up to receive updates about caregiving as they become available on MedlinePlus.gov.
To find MedlinePlus.gov’s caregivers health topic page, type ‘caregiver’ in the search box on MedlinePlus.gov’s home page. Then, click on ‘caregivers (National Library of Medicine).’ MedlinePlus.gov additionally features health topic pages on Alzheimer’s caregivers, child care, and home care services.
It is helpful to see JAMA address some caregiving issues. Let’s hope other medical journals will help educate caregivers and encourage more physician-caregiver communication.
Before I go, this reminder… MedlinePlus.gov is authoritative. It’s free. We do not accept advertising …and is written to help you.
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Your comments about this or any of our podcasts are always welcome. We welcome suggestions about future topics too!
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The National Library of Medicine is one of 27 institutes and centers within the National Institutes of Health. The National Institutes of Health is part of the U.S. Department of Health and Human Services.
A disclaimer — the information presented in this program should not replace the medical advice of your physician. You should not use this information to diagnose or treat any disease without first consulting with your physician or other health care provider.
It was nice to be with you. I look forward to meeting you here next week.
Most Americans are concerned about their ability to for medical bills, even when they have health insurance. As a result, most are comfortable asking their doctor about how much their medical treatment will cost. People are becoming savvier health care shoppers largely because they have to: 37% of people in the U.S. have an annual health insurance deductible over $2,000, according to the Spring/Summer 2013 Altarum Institute Survey of Consumer Health Care Opinion, published on 11th July 2013.
But the other side of this coin is growing patient/consumer health empowerment.
It appears that people feel competent to take on a greater role in shared decision making, self-diagnosis or assessment of symptoms, and information collecting on conditions – even before seeing the doctor. Take a look at the table, which illustrates that most do “health homework” before going to see their doctor.
Altarum polled a survey sample of 2,357 U.S. consumers in May, 2013.
Health Populi’s Hot Points:The internet has truly become a go-to source for people and their health, every day. I grew up with a thick tome of a health guide on my parents’ living room bookshelf – I remember a dog-eared Mayo Clinic Guide to Health, as well as a Merck Manual my mom picked up from a library sale in the early 1970s and her nutrition bible, Adelle Davis’ Let’s Get Well.
Today’s 5-inch-thick guide to health isn’t a book at all; it’s WebMD, NIH.gov, FDA.gov, Yahoo! health groups, WEGO Health, PatientsLikeMe, CureTogether, DiabetesMine, TuDiabetes, Migraine.com – and to be sure, Paging Dr. Google. And, it’s also friends and neighbors, whose opinions 75% of Americans trust to choose a doctor – more than online rates on a doc’s bedside manner, office waiting times, or objective information on clinical quality, according to Altarum’s poll.
What Altarum finds is that people are preparing in advance of their doctor’s appointments – preparing questions, which means spending time thinking through symptoms, family histories, observations of daily living, and other factors that may feed into an acute situation or a question about how to stay well, fit, and out of the health system.
It happens about once a week. As I scroll through Facebook and peruse the latest happenings, I notice that someone (usually a mom of small children, like me) has posed a question to their Facebook friends about some type of health dilemma.
“Little Sally is cutting teeth, and she’s miserable. What can I give her to make her feel better?”
“Johnny has such a bad cough, and he can barely breathe. Anyone used Vick’s Vaporub on a baby before?”
“Took Sam for his 4-month checkup today. Dr. says I should wait to start giving him baby food until 6 months, but I feel like he’s ready. Any moms have some advice?”
I’ve seen each of these health concerns voiced on Facebook along with many others. Various friends weigh in with their tidbits of advice or personal experience, and usually the mom will choose from those options and then report back about how that advice worked.
Here’s the problem: all health information isn’t created equal.
And crowdsourcing for medical advice isn’t likely to result in the best outcome for your child.
Although the Facebook community recommended several products for Sally’s mom to try to ease teething pain, they were likely unaware that many of these products are no longer recommended for infants because of serious health risks associated with their use.
While Johnny’s mom’s Facebook friends offered enthusiastic support for rubbing Vick’s VapoRub on his chest, feet, and even putting it under his nose, they didn’t know that this product can be harmful to children under two years of age.
Admittedly everyone have the same feeling when they are compelled by physiologic abnormality to visit the doctor. Anxiety is the leading cause of why people delay seeing a doctor, they would tend to rationalize their illness until it interferes with their day to day living. Anxiety is a common feeling especially if you have no idea of what your illness is, could it be life threatening or just a minor glitch? One should not be afraid to visit the doctor it is their job to diagnose our illness and provide us with medical interventions to maintain the homeostasis of our body. Some people when visiting the doctor don’t know what to do or what to say, some would even freeze as if that they are being interrogated. The doctor can’t help you unless you are willing to help the doctor! Yes, he may relay on laboratory findings but it will…
….An analysis of four years of Medicare prescription records shows that some doctors and other health professionals across the country prescribe large quantities of drugs that are potentially harmful, disorienting or addictive. Federal officials have done little to detect or deter these hazardous prescribing patterns.
Searches through hundreds of millions of records turned up physicians such as the Miami psychiatrist who has given hundreds of elderly dementia patients the same antipsychotic, despite the government’s most serious “black box” warning that it increases the risk of death. He believes he has no other options….
…..
The data, obtained under the Freedom of Information Act, makes public for the first time the prescribing practices and identities of doctors and other health-care providers. The information does not include patient names or the reasons why doctors prescribed particular drugs, so reporters interviewed the physicians to learn their rationales.
…
Medicare has access to reams of data about its patients, their diagnoses and the medical services they received. It could analyze all of this information to determine whether patients are being prescribed appropriate drugs for their conditions.
But officials at the Centers for Medicare and Medicaid Services say the job of monitoring prescribing falls to the private health plans that administer the program, not the government. Congress never intended for CMS to second-guess doctors – and didn’t give it that authority, officials said.
“CMS’s payments don’t go to physicians, don’t go to pharmacies. They go to plans, which is how our oversight framework has been established,” Jonathan Blum, the agency’s director of Medicare, said in an interview. The philosophy “really has been to defer to physicians” about whether a drug is medically necessary, he said.
Asked repeatedly to cite which provision in the law limits their oversight of prescribers, CMS officials could not do so.
The Office of the Inspector General of the Department of Health and Human Serviceshas repeatedly criticized CMS for its failure to police the program, known as Part D. In report after report, the inspector general has advised CMS officials to be more vigilant. Yet the agency has rejected several key recommendations as unnecessary or overreaching.
Other experts in prescription drug monitoring also said Medicare should use its data to identify troubling prescribing patterns and take steps to investigate or restrict unsafe practitioners. That’s what state Medicaid programs for the poor routinely do.
“For Medicare to just turn a blind eye and refuse to look at data in front of them . . . it’s just beyond comprehension,” said John Eadie, director of the Prescription Drug Monitoring Program Center of Excellence at Brandeis University.
“They’re putting their patients at risk.”
….
The Part D records detail 1.1 billion claims in 2010 alone, including prescriptions and refills dispensed. ProPublica has created an online tool, Prescriber Checkup, to allow anyone to search for individual providers and see which drugs they prescribe.
…
Typically in Medicare, the government is responsible for contracting with doctors, reviewing claims for treatment and paying the bills.
But Part D is different: Patients get their drugs through stand-alone drug plans, which cover only drugs, or through Medicare HMOs that also cover medical services.
Medicare pays private insurers a set amount per enrollee to run the program and pay for the drugs. All the insurance plans are supposed to alert pharmacies to potentially harmful drug interactions, query doctors who prescribe high levels of narcotics to individual patients and be on the lookout for fraud, among other things.
……
Potential for Fraud
Since Part D was launched, the HHS inspector general and the Government Accountability Office have grown increasingly worried that it lacks adequate oversight.
Although many reports focus on fraud, analysts also have found that the program was vulnerable to inappropriate prescribing that put patients’ lives in danger.
A May 2011 report said Medicare has not ensured that Part D paid only for drugs prescribed for FDA-approved and widely accepted off-label indications as federal law requires. About half of the 1.4 million antipsychotic prescriptions made to nursing home patients in the first six months of 2007 “were not used for medically accepted indications,” the report said.
“There’s certainly room for improvement,” Robert Vito, a regional inspector general who has directed many of the reports, said in an interview.
Medicare should, for example, require that prescriptions include a patient’s diagnosis as a way to monitor how Part D drugs were being used, his agency said.
But Medicare officials told the inspector general that neither state boards of pharmacy nor private industry requires this practice, so neither would they.
CMS also has rejected proposals to require insurers to report suspicious prescribing to its fraud contractor. Such sharing is now voluntary.
Medicare’s safeguards lag well behind those of many state Medicaid programs.
Louisiana requires that doctors include diagnosis codes when they write prescriptions for painkillers and antipsychotics. Similar checks have proved effective in other states. Florida found that antipsychotics given to children younger than 6 dropped when specialists reviewed prescriptions.
Even some of Medicare’s top prescribers think the program should do more to research unusual or suspicious prescribing patterns.
Indiana physician Daniel J. Hurley led the country with more than 160,000 prescriptions under Part D in 2010, ProPublica’s analysis shows. In an interview, he said nursing home pharmacies had credited him with prescriptions by other health professionals in his practice, a quirk Medicare should want to address.
It’s unclear how often this might happen, and some nursing home doctors do write lots of prescriptions on their own. Medicare said it recently addressed this issue, but according to Medicare’s own numbers, Hurley’s prescriptions have dropped only slightly.
“Why wouldn’t they call us up and ask us?” Hurley said. “If you hustled, you couldn’t come anywhere near that number, nor should you.”
I was very glad to see the new book authored by e-Patient Dave deBronkart, whose thoughts I describe to medical students as a part of the official curriculum at Semmelweis Medical School, just became available.
Medical professionals must let patients help and become equal partners in the treatment! A must-read book!
Concise reasons, tips & methods for making patient engagement effective. Third book by e-Patient Dave, cancer beater, blogger, internationally known keynote speaker and advocate for patient engagement; co-founder and past co-chair of the Society for Participatory Medicine. Profile:http://www.ePatientDave.com/about-dave
The treatment of B12 deficiency, as has been established from studies done in the 1960s, is ORAL B12. That’s right. Pills. Injections of B12 are not necessary—oral supplements work well, even in pernicious anemia. They’re cheap and they work. I suppose a very rare patient, say one who has surgically lost most of their gut, could require injections. But the vast majority of people with genuine B12 deficiency can get all of the B12 they need through eating foods or swallowing supplements. No needles needed.
So why this fetish with injections? From the patient’s point of view, shots feel more like something important is going on. Placebos need rituals—with acupuncture, for instance, the elaborate ritual creates an illusion of effectiveness. And from the doctor’s point of view, injections reinforce dependence on the physician, creating visits and cash flow.
So: people seem to think they feel better with injections, and the doctor makes a little cash, and everyone’s happy. So what’s the harm in that?
I think it’s wrong to knowingly dispense placebos, even harmless ones. We doctors like to criticize the chiropractors and homeopaths. We point fingers. They’re the quacks. We’d better take a close look at what we’re doing, first. Our placebos are sometimes far more dangerous than theirs.
More importantly, people should be able to expect more from physicians…
This article reminds me of my days as a medical librarian.
If I did not carefully listen to a patron (customer) or ask the right questions, I gave the person the wrong information!
Minutes spent in listening and asking focused questions often saved an hour (or more!) of fruitless searching.
So, when I talk with a health care practitioner, I am mindful to give as much relevant information as possible to so the proper diagnosis and treatment can be given!
It is also necessary that we all do whatever we can so that health care practitioners are given the time they need to listen to patients.
Ultimately this will result in lower health care costs overall.
Before we can understand the high cost of not listening, we need to examine in detail the diagnostic process. I am limiting my discussion to patients with chronic or recurring symptoms lasting several months. I am not discussing acute illnesses. They fall into completely different category.
At the front line of medical care, at the first contact between a patient and a doctor, the patient describes physical symptom. Whatever the real underlying cause, a physical symptom is the required ticket to see a physician. The physician, on first contact, has no idea what the underlying nature of the patient’s chronic complaint really is. At the risk of oversimplifying, there are five broad categories of the causes for complaints.
These are:
1. There is a definable medical disease in one or more organs.
2. There is no definable medical disease but the patient is in contact with an unknown toxic substance causing the symptom (inhaled, ingested, or from skin contact).
3. The patient is in a stressful or toxic relationship at home or work producing physical symptoms or even a definable medical disease. (“What the mind cannot process is relegated to the body.” Dr. William Mundy, psychiatrist, personal communication. )
4. The patient or a companion is inflicting harm. Here, there are several categories:…
…
5. There is no definable medical disease but the patient has assumed a chronic illness role in life with multiple symptoms (i.e. hypochondriasis).
Psychosomatic Illness
6. There is a sixth category; patients with psychosomatic disorders. Time and space does not permit a full discussion of this important and very common set of disorders. I suspect they represent more than fifty percent of patients seeking primary medical care. The book“The Divided Mind” explains and defines these disorders and the successful treatment applied to thousands of patients at NYU by Dr. Sorno and his colleagues. At present the medical profession denies the existence of this category. The epidemic emergence of pain clinics comes from lack of knowledge about psychosomatic disorders and their proper treatment.
Of course, the patient can have any of these, and also be suffering from a definable medical disease.
But my experience in primary care over the past 55 years — combined with studies in the medical literature —suggest that between 30 and 40 percent of first contact primary care visits are stress related or are psychological in nature (#3 and #6 in above list).
It should be obvious that the only way to sort out these causes of symptoms requires very careful listening to the narrative of the patient’s life. Some of these causes can be determined only by listening…..
1. There’s not strong data to support self-tracking.We can make some inferences about how self-tracking would work in a clinical setting by looking at the studies done on telemonitoring, which also generates a large volume of attribute-rich data. Some studies have shown benefit in outcomes, especially for diseases like diabetes, COPD, and hypertension. However, hard measures like mortality have not been improved by telemonitoring devices. Data on hospitalization and ED visits, especially in the elderly, have been mixed. People (especially the engineers who created these wonderful devices and apps) love to think that more data points are better. But to date, we just don’t have a robust set of well controlled studies telling us what self-tracking is useful for, what devices or apps to use, how to interpret the data, or how to integrate it into medical care.
2. Physicians may not want the data. Imagine that a 45-year old man who had just started exercising after years of inactivity gives their doctor all of their heart rate measurements from the past month. All 5000 measurements. There’s no way their physician is going to want to touch that data. Buried inside those data points will be erroneous and clinically meaningless measurements which, without review and context, will be fodder for trial lawyers when something bad happens. It’s data overload to the Nth degree, because let’s face it … anything can be tracked. Once data gets put into the medical record, it’s assumed the physician has reviewed the data and acted on it accordingly. No one wants something in the patient’s chart that not only has limited medical use but carries substantial legal risk.
Finally, we need to pay physicians to analyze and counsel about the data, similar to how we pay for EKG interpretation or reading an x-ray. Fee-for-service still rules the roost, and nothing gets done unless someone pays for it…
A nationwide survey ***of US adults finds that 1 in 3 of Americans say they have used the internet to help them diagnose a medical condition, either for themselves or someone else. But, when asked who they turned to for help with a serious health issue, either online or offline, the majority said they turned to a doctor or other health professional…
…when these “online diagnosers” were asked who they turned to for information, care or support the last time they had a serious health problem, either online or offline:
70% said they got it from a health professional,
60% turned to family and friends, and
24% said they got it from others with the same condition.
When the survey asked online diagnosers if the information they found online had led them to think they needed to see a doctor, 46% said yes, while 38% said they could take care of it themselves and 11% said it was a case of both or something in between.
It is increasingly becoming the year of the Thrifty Patient. People are paying for more medical care and are more responsible for the costs of getting that care via higher deductibles and co-pays. Patients don’t have a choice but to be involved in their care. Though the recent 2008 recession saw a decrease in overall medical and health care utilization as a sign of better informed patients, I believe that was simply because people deferred needed care in order to keep their jobs. With the economy getting better, more people will begin to seek care again. The question is how can they save money on medical and health care costs?…..
For providers apprehensive about increasing demands for patient engagement, a small dose of email could get them on their way toward becoming comfortable with the idea as well as the practice. “For the organizations who’ve pushed patient portals the furthest into their patient base, email is always the place where things started,” argues Avado CEO Dave Chase in a recent contribution toForbes. According to Chase, email is the equivalent of a gateway drug in the context of patient engagement able of easing providers’ concerns about additional work and responsibility that they fear having to undertake by making themselves more available to their patients.
“Physicians are understandably concerned about being overwhelmed by emails if they provide an option for secure messaging,” writes Chase. “Interestingly, the physicians who have given out their phone number or enabled secure email (without remuneration) haven’t found they are overwhelmed by any means.”
Given that so much of medicine is built on evidence-based studies, research findings should compel providers to at least acknowledge the benefits of engaging with patients electronically. Kaiser has continued to show that electronic patient engagement can lead to improve patient outcomes for those with chronic disease as well as maintain the loyalty of patients who will remain customers of the healthcare organization’s services………
Doctors are failing to really listen to patients’ views on how they want to be treated, suggests a study in the British Medical Journal.
The Dartmouth College research says working out a patient’s preferences is as important as an accurate medical diagnosis.
Involving patients in discussions about treatment could cut the cost of healthcare around the world, they say.
Doctors should follow a three-step approach to engaging patients.
The BMJ analysis, written by three healthcare experts from the Dartmouth Center for Health Care Delivery Science in New Hampshire, US, is based on a report written for the UK’s King’s Fund, a policy thinktank.
In it they argue that “preference misdiagnosis” – misinterpreting or ignoring the patient’s wishes – is a significant problem which is damaging to both doctors and patients.
The researchers say it can lead to, what they call, “silent” misdiagnoses – when doctors choose the wrong treatments because they fail to assess their patients’ preferences correctly.
These misdiagnoses are “silent” because they go largely unreported.
Priorities
While doctors are taught to concentrate on diagnosing the medical problem, the authors point to evidence which suggests doctors are not as good at setting out all the treatment options and finding out how the patient feels about them.
In one study they looked at, doctors believed that 71% of patients with breast cancer rate keeping their breast as a top priority, but the figure reported by patients was just 7%.
In another study of dementia, patients placed substantially less importance than doctors believed on the continuation of life with severely declining brain function.
Evidence also shows that patients often choose different treatments after they become better informed about the risks and benefits, say the authors….
….
“More than 100 years ago student doctors were told to ‘listen to the patient, he is telling you the diagnosis’.
“Today, the rise in treatment options makes this even more critical, not only to reach a correct medical diagnosis but also to understand fully patients’ preferences – and reduce the huge waste in time and money that comes from the delivery of services that patients often neither want nor need.”
Anna Dixon, director of policy at the King’s Fund, said the research supported the idea that patients should be helped to make decisions about their care.
“Not only does it find that this results in more appropriate treatment than currently achieved but, rather counter-intuitively, it results in dramatically lower intervention rates.”
Dr Vivienne Nathanson, head of science and ethics at the British Medical Association said good medicine was about doctors using their knowledge and expertise to help patients make informed choices.
“Good decisions about treatment reflect both a patient’s preferences, and the relevant medical evidence. Doctors try to help patients express their preferences and are aware that these sometimes differ from those of the ‘average’ patient.
“Exploring how the patient’s preferences and values relate to the decision to be made requires a relationship of trust between patient and doctor.”
The mobile healthcare industry has made significant strides within the healthcare provider community. Rock Health found 75% of small and medium size medical and dental offices will purchase tablets within the next year. And almost 40% of physicians use medical apps on a daily basis.
The digital healthcare field is also alleviating the costs of patientcare and increasing the scale at which doctors and nurses can help people. The healthcare industry is already strained, Ziegler says, and a shortage of primary care physicians in years to come will only exacerbate the problem. She says mobile apps can bridge that gap.
But patients have been slower to realize the impact apps could have, Ziegler says, potentially because the apps force people to take notice of their health.
“No one wants to actively track what they are always doing, so we really want to make the experience passive,” she told us, adding, they are working to make tech and apps that “provide incentives for people to manage health more efficiently.”
Consumers are also generally unaware of how quickly the space of mobile health is growing, David Tao, Chief Research Officer at Greatist, tells Mashable. He says once consumers realize the vast industry already accessible, more consumers will begin utilizing the products.
“Mobile health isn’t a replacement for healthcare, it’s a supplement,” Tao says. “These companies aren’t replacing doctors’ keen eye or experience, but the apps are just bettering communication between doctor and patient.”
And these may be helpful when selecting health apps
How to Choose A Better Health App (by LEXANDER V. PROKHOROV, MD, PHD at KevinMD.com on August 8, 2011) contains advice in the following areas
Set realistic expectations
Avoid apps that promise too much
Research the developers
Choose apps that use techniques you’ve heard of
See what other users say
Test apps before committing
iMedical apps has mobile medical app reviews and commentary by medical professionals. Most apps are about apps geared toward professionals and are not free.
Remember, anyone can publish information on the internet!
If something sounds too good to be true, it probably is.
If the Web site is primarily about selling a product, the information may be worth checking from another source.
Look for who is publishing the information and their education, credentials, and if they are connected with a trusted coporation, university or agency.
Check to see how current the information is.
Check for accuracy. Does the Web site refer to specific studies or organizations?
Quackwatch (a private corporation operated by Stephen Barrett, MD)
And a Rumor Control site of Note (in addition to Quackwatch)
National Council Against Health FraudNational Council Against Health Fraud is a nonprofit health agency fousing on health misinformation, fruad, and quackery as public health problems. Links to publications, position papers and more.
I’ve given hundreds of presentations and I teach at several universities about the use of social media in everyday medicine and I always highlight the importance of 1) doctor-patient relationship in person, and 2) good communication skills for doctors, but if I try to think ahead, I have to agree with Vinod Khosla that technology can replace 80% percent of the work of doctors.
Khosla believed that patients would be better off getting diagnosed by a machine than by doctors. Creating such a system was a simple problem to solve. Google’s development of a driverless smart car was “two orders of magnitude more complex” than providing the right diagnosis.
IBM’s Watson is just the perfect example here. They have been working closelywith oncologists at Memorial Sloan-Kettering Cancer Center in New York in order to see whether Watson could be used in the decision making processes of doctors regarding cancer treatments. Watson doesn’t answer medical questions, but based on the input data, it comes up with the most relevant and potential answers and the doctor has the final call. This is an important point as it can only facilitate the work of doctors, not replacing them…
..So what should we expect to see in the next decades? I think we will see amazing developments in many areas, except medicine in which small and slow steps will mark the way towards a more transparent healthcare system in which decision trees are available for everyone, online content and social media are both curated, patients are empowered, doctors are web-savvy, and collaborative barriers are gone forever. A new world in which medical students are trained to be able to deal with the rapidly evolving technologies and e-patients.
A push to treat chronic pain and financial disincentives for treating addiction may pressure clinicians into prescribing opioids for patients who are already addicted, a researcher suggested.
Over the past decade, there’s been a perfect storm of changing clinician attitudes toward pain treatment and patient attitudes towards suffering, combined with a lack of compensation for time-consuming clinic visits such as addiction counseling, Anna Lembke, MD, of Stanford University, wrote in a perspective in the New England Journal of Medicine.
That may be leading doctors to write scripts for pain pills even if they know those patients are abusing their medications, Lembke wrote.
“Treatment of pain is held up as the holy grail of compassionate medical care,” she wrote, and clinicians have, over the last decade, felt more compelled to deliver treatment.
They also have the additional pressure of consumer ratings sites, because patients who are dissatisfied may turn around and leave a less-than-favorable review online. Lembke cites the example of one colleague who will occasionally bite the bullet: “Sometimes I just have to do the right thing and refuse to prescribe them, even if I know they’re going to go on Yelp and give me a bad rating,” the colleague told her…
Most patients I see are surprised to find out that there’s something they should have brought to their doctor’s visit. Granted, I’m an emergency physician, and many of my patients come to me in emergency situations that they can’t plan for. However, most people have some heads-up for going to their doctor. Certainly if you’re going to your annual check-up or a routine appointment, you should bring these items with you.
Keep this checklist readily accessible; even if you’re going to the hospital for an emergency appointment, aim to take the following 10 items with you:
1. A medical card. It would be ideal for every doctor to have a full list of your medical history, but our country is not even close to having a nationally accessible medical record system. To make sure your doctor has your information available, carry a card with you. You can find many cards that easily downloadable on the Internet where you list your medical problems, surgeries, doctor’s names, insurance, and allergies. Especially if you are seeing a coverage doctor or visiting the E.R., he or she may not have your medical record. This makes sure that your doctor can see your most critical medical information.
2. Changes to your medical record. If you have had recent test results since you last saw your doctor, bring these with you. Even if it was your doctor that you’re going to see who sent you to get the test, bringing the results will make sure that they are discussed during the visit.
8. A family member or a friend. Having someone with you will give you support and company during the appointment. As importantly, they can help remind you of your questions and concerns, and is another measure to help ensure your doctor answers all the questions that you have.
9. A smartphone. Everyone seems to have some kind of smartphone device: an iPhone, a Blackberry, an iPad. There will downtime when you’re waiting. Use this time to look up what your doctor has told you. The smartphone also keeps you busy if your wait is particularly long!
10. Some snacks. Often, there are limited food options are the doctor’s office, and you may be waiting for some time. Unless you’re told not to eat, or have a complaint that you’re not sure how it will go, having something on hand can help make you feel better.
I hope this list is useful for you as you prepare for your next doctor’s visit.
The use of computers in everyday medical practice has finally reached the tipping point.
The HITECH Act, part of the 2009 federal stimulus bill, has been the final kick in the pants that U.S. health care has long needed to make the conversion to digital. The act states that, by employing electronic health records (EHRs) in a fashion known as meaningful use, doctors are individually eligible for Medicare subsidies of $44,000, paid out over five years. Before now, only early adopters and deep-pocketed institutions like hospitals and large medical groups could afford the investment to convert to EHRs.
In general, EHRs are secure digital repositories of patient information–doctors’ notes, lab and X-ray reports, and letters from specialist physicians. They are an electronic version of the paper chart. Newer, more advanced EHRs are integrated systems and allow doctors to order tests, generate bills, communicate with patients, and run analyses on aggregate patient data. In hospitals, nurses use EHRs to administer and record medication dosing and document other patient care activities.
Though medical practices have a high burden of proof to claim their bonus–the Department of Health and Human Services is still in the process of fully defining just what constitutes ‘meaningful use’–there is now conclusive evidence that the carrots are working. Recent data demonstrates that solo and two-doctor offices, which still comprise over half of all medical practices in the U.S., have seen the biggest jump in EHR adoption over the last six months. These small shops are reaching the conclusion that they must.. participate, as they risk being left behind technologically and financially…
..
No one describes this more elegantly than doctor and author Abraham Verghese, who has lamentedthe rise of the “iPatient.” For Verghese, the iPatient symbolizes the adoption of technology to a level that is eroding the foundational elements of the profession, like the physical examination. He decries trainees spending vastly more time at computer stations looking over their ‘virtual’ patient [the collection of progress notes plus lab and x-ray data, not an avatar] than giving face time to the sick person down the hall. Other commentators describe the sloppy habits of ” copy and paste” medicine, in which doctors (especially trainees) perpetuate the same patient histories from one hospital admission to the next without applying fresh thinking. [Human nature is no different among doctors: Where possible, we take the path of least resistance.]
Further, doctors and nurses are now tethered to computer appliances. To perform any basic hospital function (e.g. admission, lab test, x-ray, pill delivery, discharge), an order needs to be sent via the computer system. The good in this is that all doctors’ orders go through one standardized entry point: It eliminates issues with poor physician penmanship. However, the technology inhibits doctors and nurses from actually talking to one another…
…
There is hope, however. Bryan Vartabedian, a pediatric gastroenterologist and social media enthusiast in Texas, gives voice to the possibilities of doctor-patient collaboration using technology. In a blog post about his visit to an orthopedic surgeon for back problems, Vartabedian writes (italics mine):
…through the course of my visit he never touched me. We spent an extraordinary amount of time examining my MRI. Together in front of a large monitor we looked at every angle of my spine with me asking questions. I could see firsthand what had been keeping me up at night. I could understand why certain positions make me comfortable. What we drew from those images could never be determined with human hands. In my experience as a patient, I consider it one of my most thorough exams.
Vartabedian is describing a new paradigm, in which he plays the role of empowered patient and demands an explanation to his level of satisfaction. In the parable offered, the technology is the medium, not the message….
e-patient Dave de Bronkart was successfully treated for kidney cancer at a very late stage. He credits his recovery to using the Internet to find trusted medical information as well as to get advice from patients via support groups.
His video Let Patients Help outlines how and why patients should empower themselves.
Some video highlights
Patients are presently the most underutilized part of the health team
The e-patient movement is at least partly based on hippie ideals of self-reliance and self-care (think Whole Earth Catalog)
e-patients are empowered, engaged, equipped and enabled through finding information to use in discussions regarding treatment options with their health care providers
Support groups often are useful in providing information not available at other sites (as which doctors specialize in certain treatments)
Patients not only need quality information, but also access to their raw medical data
Patients with access to notes written by their doctors feel more in control of their care and report a better understanding of their medical issues, improved recall of their care plan and being more likely to take their medications as prescribed, a Beth Israel Deaconess Medical Center-led study has found…
…
“Open notes may both engage patients far more actively in their care and enhance safety when the patient reviews their records with a second set of eyes.”
“Perhaps most important clinically, a remarkable number of patients reported becoming more likely to take medications as prescribed,” adds Jan Walker, RN, MBA, co-first author and a Principal Associate in Medicine in the Division of General Medicine and Primary Care at BIDMC and Harvard Medical School. “And in contrast to the fears of many doctors, few patients reported being confused, worried or offended by what they read.”…
..
Of 5,391 patients who opened at least one note and returned surveys, between 77 and 87 percent reported open notes made them feel more in control of their care, with 60 to 78 percent reporting increased adherence to medications. Only 1 to 8 percent of patients reported worry, confusion or offense, three out of five felt they should be able to add comments to their doctors’ notes, and 86 percent agreed that availability of notes would influence their choice of providers in the future.
Among doctors, a maximum of 5 percent reported longer visits, and no more than 8 percent said they spent extra time addressing patients’ questions outside of visits. A maximum of 21 percent reported taking more time to write notes, while between 3 and 36 percent reported changing documentation content…
Walker suggests that so few patients were worried, confused or offended by the note because “fear or uncertainty of what’s in a doctor’s ‘black box’ may engender far more anxiety than what is actually written, and patients who are especially likely to react negatively to notes may self-select to not read them.”..
About 10 years an area health care provider told me she did a study on prescription adherence.
The results included a shocking low percentage of folks taking their prescriptions as prescribed.
She said that no journal would publish the results, because the rates of adherence were so low. (This seemed odd to me, this reasoning).
I’ve been prescribed a cholesterol lowering drug, for being a bit over the HDL threshold. I decided to stop taking it, because after all I have read, I don’t really believe in either the tests, the thresholds, and the efficacy of the drug. No, I haven’t discussed this with my prescribing physician, but I think I’m going to catch hell on the next annual exam. For the past 5 years (age 58) I’ve only seen the doctor about once a year, just for the annual wellness.
Analyses indicated that although physicians uniformly felt responsible for assessing and promoting adherence to prescriptions, only a minority of them asked detailed questions about adherence.
“Medicine left in the bottle can’t help.”
— Yoruba proverb
Lack of adherence to prescriptions (that is, patients failing to take medicine either as instructed or at all) afflicts medical care in the United States. Nonadherence affects up to 40 percent of older adults, especially those with chronic conditions, and is associated with poor outcomes, more hospitalizations, and higher mortality. The health care cost of nonadherence is estimated at $290 billion per year. Prior RAND research has shown that some nonadherence is cost-related and can be addressed through insurance benefit designs that keep copayments low.[1]
Physicians also play a key role in addressing nonadherence. Yet physician perspectives on their responsibility for nonadherence and strategies for promoting adherence are not well understood. A team from RAND; the University of California, Los Angeles; and the University of California, Davis, examined physicians’ views about their responsibility for medication adherence and explored how physicians and patients discuss nonadherence. The team conducted focus groups with physicians in New Jersey and Washington, D.C., and audiotaped primary care visits in Northern California doctors’ offices.
The results point to a contrast between what physicians believe and what they do:
Although physicians uniformly felt responsible for assessing and promoting medication adherence, only a minority of them asked detailed questions about adherence.
Although providers often checked which medications a patient was taking, they rarely explicitly assessed adherence to these medications.
Many physicians expressed discomfort about intruding on patients’ privacy to detect nonadherence. In the office, they rarely asked about missed medication doses.
Most cases of nonadherence detected during office visits were revealed through unprompted patient comments.
Physicians’ reluctance to intrude has important implications for the vast array of new information that is becoming available from pharmacy benefit plans, managed care plans, and other data repositories. In addition, the reluctance to inquire that the physicians described contrasts sharply with the physician role in the increasingly prominent concept of the medical home, where primary care doctors are envisioned as playing a central and active role in managing and coordinating care.
The authors conclude that addressing nonadherence will require a different approach than the one they observed in the study. Given the importance of patients’ shared responsibility, a new paradigm that clarifies joint provider-patient responsibility may be needed to better guide communication about medication adherence. In this context, developing new protocols to guide discussions of adherence is worth exploring.
Some edits made, and new items added, late the same evening.
I’ve recently learned of some well-intentioned medical research that disturbs me so deeply that I think it’s time to get formal about teaching e-patients and their partners how to detect research that misses its target, even if it’s well intentioned.
Doing this responsibly requires a deep understanding of the purpose of research and its methods. So this is the start of a series in which I’ll lay out what I’ve learned so far, describe the problems and challenges and opportunities that I see, and invite dialog on where I’m wrong and your own experiences as patient or clinician or researcher.
If this succeeds we’ll have a new basis for considering questions of what to do and how to prioritize it, in this era of change in medicine – not just in research but in all of medicine, as we work on reducing our spend. My goal in the series will be to be as clear in my writing as I can, while being as verifiably accurate as I can, given that I’m no PhD or Pulitzer laureate. Critique and correction are welcome.
This first post is an introduction, with background reading.
Context: Patient Engagement
The context for this series is patient engagement: patients shifting from being “compliant” cars in a medical car wash to being responsible and engaged.
Empowered, engaged patients take responsibility for their health and their care. One aspect is being responsible for understanding, as best we can, the evidence that a recommended treatment is right for us. Sometimes it’s pretty simple, sometimes not; but the higher the stakes get, the more important it is.
With respect to research, there’s a big challenge: sometimes the published evidence sucks – even though it got through the peer review process and was approved by a big-name journal.
Of course not all evidence sucks. But if you’re considering whether to be cut open or eat chemicals (meds), you have a choice: trust blindly (“whatever you say, doc”) or take responsibility for understanding as much as you can.
As we’ll discuss, one big reason blind trust fails is that the evidence your doctor gets isn’t necessarily great, and most clinicians aren’t rigorously trained in how to scrutinize it. (They too are largely trained to trust the journal process.) So this is for them too.
Intended audiences
Patients and caregivers – the people on the receiving end of the treatment; the ones who make the decision to accept treatment.
Clinicians, for two reasons:
In a participatory relationship, the patient and clinician need to be on the same page regarding the basis for decisions, or one will think the other’s crazy
As I said, in my experience most clinicians haven’t been rigorously schooled in the weakness of the info they were taught to trust. (This isn’t an insult; see homework below.)
Health policy people (government and non-profits), because they need to be firmly grounded in reality, or they can’t possibly make policies that work in reality (eh?)
Insurance companies (commonly euphemized as “care plans” or just “the plans”), who decide what will get paid for. (I know some insurance companies don’t mind paying for stuff that doesn’t work; they basically get a commission on all spending. But others do care what works and what doesn’t – some even have staff who help patients understand the options! They need to be well informed too.)
Others, I’m sure.
This will make some people unhappy.
It’s the unhappiness that comes from realizing the world isn’t what you thought it was. And the unhappiness that comes from realizing you have to adjust.
But ladies and germs, disconnects like that are what keep a dysfunction in place and make problems intractable. So, comfortable or not, let’s get on with it. The unhappiness I anticipate:
Some clinicians don’t welcome questions from their patients. (Others do.) In my personal experience most of the ones who object don’t realize how weak the evidence is.
I hope they’ll remember what I learned in school: all science must be open to new information. (As SPM co-founder and ACOR founder Gilles Frydman said in 2010, “All knowledge is in constant beta.”)
I know clinicians have many pressures including short appointments. This doesn’t have to be done by an MD; in my view of the future, every “medical home” will have coaches who can help assess published material.
Some patients really don’t want to hear that the science they depend on – which has indeed produced miracles – has also produced crap sometimes. They especially don’t want to hear that clinicians – their clinicians, who they know are good people – aren’t perfect.
In general, everyone wants certainty – doctors and patients alike – so it’s unsettling to know you can’t have it. (Even the best science has a chance of errors, and all science is subject to correction.)
Important: This is not a “we reject science” series.
I love science. I personally am alive because of great medical research that created a harsh treatment delivered brilliantly by great clinicians at Beth Israel Deaconess in Boston. I love the training and clinical experience that made them able to save my life!
It included great laparoscopic surgery and orthopedic surgery developed by great skilled scientists and delivered by skilled, adroit surgeons & teams. Hooray for science!
But in the end, science knows that there is no certainty. They’re doing the best they can amid uncertainty. Heck, I myself live in uncertainty:
The best evidence (which is not great) says there’s a 50% chance my cancer will return, which would likely kill me
At diagnosis the evidence said I had 24 week median survival
On the flip side, the treatment that did cure me usually doesn’t work.
Bottom line: There Is No Certainty.
The art of designing, conducting and reporting research includes dealing accurately with this issue.Whatever you read, there’s always a chance it’s wrong.
In my view, the ultimate responsible patient understands this, accepts the uncertainty (as best a human can), and responds by saying “Okay, what are the options? And what are the chances they’ll work?”
If you fully understand that much research is shaky and deserves questioning, you can skip to the end and wait for round 2. If not, read these past posts, because if you don’t realize there’s weakness, you have no reason to learn what comes next.
Here’s your homework.
Past posts establishing the need to be responsible for our decisions
Great article on communication/relationship skills.
It shows how to show you value advice on your own terms.
This reminds me of a scene in Gone With the Wind. Rhett takes baby Bonnie for a walk in her baby carriage. He passes two older women and asks for their advice on breaking the child’s habit of thumb sucking. Although the advice does not seem good, Rhett smiles and thanks them profusely. After Rhett departs, the women talk amongst themselves what a wonderful father Rhett is.
Late in my family practice residency – and very early in my parenting career – I had mentioned the persistent and sometimes uncomfortably intrusive suggestions offered by my mother and mother-in-law. One of our faculty, a seasoned pediatrician and parent, made the suggestion that I call both sets of grandparents regularly and ask for advice. He pointed out that their motivation (to be helpful and involved) was beyond reproach and that they probably had valuable insights to offer, if I could just reframe it to protect my own need to be autonomous and masterful. It worked like magic. The unsolicited advice nearly disappeared – and I learned a great deal from our conversations. The grandparents felt needed. I benefitted. And so did my kids.
Over the years, I have found it a valuable life strategy, and it comes up fairly frequently in practice:
I tell all new parents at my first opportunity that they should each call their in-laws regularly to discuss parenting concerns and ask for suggestions, pointing out that the investment in making them feel like a valued contributor will pay huge dividends over time, and making sure that they realize that asking for advice will make it easier to ignore it.
I suggest to parents that they play various versions of the “what if” game with their kids, getting the kids to help decide how best to set rules, reward success, and punish transgressions.
I tell young adults starting a marriage (or other long term relationship – times have changed) that they should make a point of asking their partner’s opinion and advice often and sincerely, to build a comfortable platform of sharing.
I suggest proactive questions and requests for feedback when I see people with job stresses.
When patients are diagnosed with a serious illness for which others will be directing their care (cancer, degenerative neurologic disease), I tell them we are going to be proactive rather than reactive, and schedule regular appointments to discuss their progress and concerns. This makes sure that they understand I want to remain involved, and I avoid having to deal with crises and questions in a vacuum. (Since we often have a long term relationship, I also find that they need to have me tell them the same things the specialist has said to understand it and believe it.)
When patients reach an age and health status where they are declining and vulnerable, I suggest that we schedule regular visits to talk about how things have gone and what problems we might expect, rather than waiting to things to go wrong.
As a doctor, I appreciate that I am at an advantage when I seek medical care. Knowing terminology and basic medical principles helps a lot. In addition, when you’ve been practicing medicine for a while you get a feeling from how a doctor discusses options if the care seems valid or if a second opinion is in order. Other things I look for are board certification and a doctor who explains their treatment plan in the context of recommended guidelines.
Summarizing everything that combines to make good medical care is very hard. However, from time to time I take unfortunate histories from patients or hear stories of medical misadventures from friends and I just cringe. Actually, they make me want to shout, “Your doctor did/said what?!” These are red flags, because not only are these recommendations potentially harmful, but if your doctor recommends one thing that is so flagrantly bad, well, uh, um, how can you trust the rest of their care?
So, these are six red flags that would make me stop and not pass go. They would make me get up, get dressed, and say, “Thanks but no thanks,” and walk out the door looking for a second opinion:
1. A prescription for estrogen containing birth control (pills, patch, or ring) with no inquiry about migraines. Why? Migraines with aura are an absolute contraindication to estrogen containing birth control (do to an increased risk of stroke) and if your doctor were up to date on the WHO/CDC guidelines he/she would know that. I want my doctor to be up to date on guidelines, you know?
This blog presents a sampling of health and medical news and resources for all. Selected articles and resources will hopefully be of general interest but will also encourage further reading through posted references and other links. Currently I am focusing on public health, basic and applied research and very broadly on disease and healthy lifestyle topics.
Several times a month I will post items on international and global health issues. My Peace Corps Liberia experience (1980-81) has formed me as a global citizen in many ways and has challenged me to think of health and other topics in a more holistic manner.
Do you have an informational question in the health/medical area? Email me at jmflahiff@yahoo.com I will reply within 48 hours.
My professional work experience and education includes over 15 years experience as a medical librarian and a Master’s in Library Science. In my most recent position I enjoyed contributing to our library’s blog, performing in depth literature searches, and collaborating with faculty, staff, students, and the general public.
While I will never be be able to keep up with the universe of current health/medical news, I subscribe to the following to glean entries for this blog.
Gerd Gigerenzer
Health and Medical News and Resources 
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