Ethics: A Patient’s Right to Not Know.
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?
From the 5 March 2014 UT-San Diego article
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.
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.
Read the entire article here
From the 21 March 2014 Daily Telegraph article
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……..
“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.”
Skype (Photo credit: Wikipedia)
Order or Download Your Free Patient Packet | NCCAM
From the Web page
Order or Download Your Free Patient Packet
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
- Get the Facts: Are You Considering Complementary and Alternative Medicine? This fact sheet will assist you in your decision making about using CAM.Download PDF
Order your packet online or call 1-888-644-6226 and use reference code D393.
From the 4 February 2014 Mayo Clinic Press Release
ROCHESTER, Minn. — Feb. 4, 2014 — Clinicians and patients should use shared decision-making to select individualized treatments based on the new guidelines to prevent cardiovascular disease, according to a commentary by three Mayo Clinic physicians published in this week’s Journal of the American Medical Association.
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!
From the 4 February 2014 Kevin MD article by Pamela Wible, MD
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
Read the entire article (with 113+ comments) here
Parents unclear about process for specialist care for kids.
No recommendations, but an interesting survey.
From the University of Michigan Press Release
Answers vary about the roles of parents and care providers in referral process, according to U-M’s National Poll on Children’s Health
ANN ARBOR, Mich. – Parents vary widely in views about their responsibilities in getting specialty care for their children, according to a new University of Michigan C.S. Mott Children’s Hospital National Poll on Children’s Health.
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.”
Broadcast-quality video is available on request. See the video here:http://www.youtube.com/watch?v=uif7xpr5iy8&feature=youtu.be
Full report: C.S. Mott Children’s Hospital National Poll on Children’s Health
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.
Things Physicians and Patients Should Question | Choosing Wisely.
Ever wonder if a medical test or procedure was right for you?
Maybe you read about it, hear it on the news, or came across it on the Internet.
Here’s Web site that just might help in discussions with your health care provider.
From the Choosing Wisely site
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.
This concept was originally conceived and piloted by the National Physicians Alliance, which, through an ABIM Foundation Putting the Charter into Practice grant, created a set of three lists of specific steps physicians in internal medicine, family medicine and pediatrics could take in their practices to promote the more effective use of health care resources. These lists were first published inArchives of Internal Medicine.
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.
From the List at Choosing Wisely, by the ABIM Foundation
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):
Patient-Friendly Resources from Specialty Societies and Consumer Reports:
Health Care Consumerism: Patients Still Lack Agency at the Point of Care | Health care and the digital revolution.
From the 27 January 2013 post at Health care and the digital revolution – A graduate student’s take on health care going digital – Claudia Paz
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.
A patient having his blood pressure taken by a physician. (Photo credit: Wikipedia)
By VAL JONES, MD | PHYSICIAN | at the 12 November 2013 KevinMD.com blog
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.
Read the entire post here
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:
- discharge Medications: (list)
- present Medications: (list)
- diagnostic tests reviewed/disposition (list)
- disease/illness education (discussion documentation)
- 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.
Kathy Nieder is a family physician who blogs at Family Practice 2.0.
From the 25 October 2013 blog item By LESLIE KERNISAN, MD at The HealthCare Blog
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.”
Well, I went, I saw, and I even briefly presented (in aworkshop on using patient-generated data).
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.
Read the entire blog item here
From the 23 October 2013 item at The Health Care Blog
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.
Read the entire article here
A patient having his blood pressure taken by a physician. (Photo credit: Wikipedia)
From the 30 September 2013 transcript by Robert Logan, Director of the US National Library of Medicine
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.
To find MedlinePlus.gov, just type in ‘MedlinePlus.gov’ in any web browser, such as Firefox, Safari, Netscape, Chrome or Explorer. To find Mobile MedlinePlus.gov, just type ‘Mobile MedlinePlus’ in the same web browsers.
We encourage you to use MedlinePlus and please recommend it to your friends. MedlinePlus is available in English and Spanish. Some medical information is available in 43 other languages.
Your comments about this or any of our podcasts are always welcome. We welcome suggestions about future topics too!
Please email Dr. Lindberg anytime at: NLMDirector@nlm.nih.gov
That’s NLMDirector (one word) @nlm.nih.gov
A written transcript of recent podcasts is available by typing ‘Director’s comments’ in the search box on MedlinePlus.gov’s home page.
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.
Read entire transcript here
People are growing their health-consumer muscles in 2013 | Health Populi.
From the 31 July 2013 article at HealthPopuli
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.
Many of the media stories coming out of the Altarum survey since its publication have been about people and their trust in doctors – or lack thereof.
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.
Originally posted on Musings Of A Nurse:
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…
View original 687 more words
ProPublica, May 11, 2013, 9:06 p.m., by Tracy Weber, Charles Ornstein and Jennifer LaFleur
….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.
Several reports have found that Part D is vulnerable to fraud. Insurers have paid for prescriptions from doctors who were barred by Medicare. Separately, in 2007 alone, the program covered $1.2 billion worth of drugs prescribed by providers whose identities were unknown to insurers or Medicare, according to a June 2010 report.
The inspector general even found fault with the contractors Medicare hired to dig out fraud: The contractors generated few of their own investigations, relying on outside complaints for direction.
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.”
Let Patients Help: A New Book Authored by e-Patient Dave deBronkart | ScienceRoll.
From the 20 March 2013 post at Science Roll
Posted by Dr. Bertalan Meskó in e-patient, Health 2.0, My Bookshelf, Web 2.0.
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
From the 3 February 2013 post at KevinMD.com
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…
Read the entire article here
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.
From the 18 January 2013 post at The Health Care Blog
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.
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).
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…..
Read the entire article here
From the 17 January 2013 article by KEEGAN DUCHICELA, MD at KevinMD.com
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…
Read the entire article here
English: medications (Photo credit: Wikipedia)
The EurkAlert article is here.
If the prescribing health care practitioner forgets, here they are
- the medication’s name
- its purpose
- the directions for its use
- the duration of use
- the potential side effects
From the 15th January 2013 article at Medical News Today
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.
Read the entire article here
***The full Pew Internet report Health Online 2013 may be found here
From the 2 January 2012 article by DAVIS LIU, MD at Kevin MD.com
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?…..
Read the entire article here
From the December 7, 2012 post at EHR Intelligence
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.”
From the 8 November 2012 article at BBC Health
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.
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.”
From the 8 August 2012 post at Mashable Lifestyle
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.”
- Health and Wellness Information and Tracking Apps (Flahiff’s Health/Medical Resources site)
- Health and Fitness Tracking Apps (Flahiff’s Health/Medical Resource site)
- 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.
- The iMedical app forum now includes a medical librarian corner, with some patient/consumer apps
- Evaluating Health/Medical Information
- The Penn State Medical Center Library has a great guide to evaluate health information on the Internet.
- The tips include
- 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?
- The Family Caregiver Alliance has a Web page entitled Evaluating Medical Research Findings and Clinical Trials Topics include
- General Guidelines for Evaluating Medical Research
- Getting Information from the Web
- Talking with your Health Care Provider
- Additional Resources
- And a Rumor Control site of Note (in addition to Quackwatch)
- National Council Against Health Fraud National 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.
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By Kristina Fiore, Staff Writer, MedPage Today,Published: October 24, 2012
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…
Wow, am I the last person on earth sans smartphone?
From the 23 October 2012 article by Leana Win, MD at KevinMD.com
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.
3. Your medications.
[Read the entire article at http://www.kevinmd.com/blog/2012/10/preparing-doctors-visit-10-bring.html]
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.
Health Applications for Android Tablets (Photo credit: IntelFreePress)
From the 15 October 2012 post by JOHN SCHUMANN, MD at KevinMD.com
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
From the 1 October 2012 article at Science Daily
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.
From the Rand report summary
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.
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.
A patient having his blood pressure taken by a physician. (Photo credit: Wikipedia)
From the 1 September 2012 post at ePatient Dave
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.
- 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
These posts are from e-patients.net………
Click here for the rest of the post
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.
From the 12 August 2012 article at KevinMD.com
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.
From the 9 August 2012 article at KevinMD.com
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?
Click here to read the entire article
Yesterday I reflagged an item about the Free UMSkinCheck Mobile App.
While these self check apps are wonderful consumer and patient tools, they are not without “problems”.
This KevinMD.com post outlines health app use challenges as folks gathering data without knowing what to do with and reimbursement issues (physician consultations outside of the office).
Article ends with statement “Until our system puts more value on avoiding unnecessary treatment and keeping people well we will be stuck in this struggle between patients who want to avoid seeing the doctor and doctors who can’t afford to let patients do that.”.
by ROB LAMBERTS, MD(KevinMD.com post, 17 July 2012)
Eric Topol wrote a post on The Health Care Blog where he looks to a future enabled by emerging technology: “Just as the little mobile wireless devices radically transformed our day-to-day lives, so will such devices have a seismic impact on the future of health care. It’s already taking off at a pace that parallels the explosion of another unanticipated digital force — social networks….
large number, if not the majority, of ear infections are undiagnosed and clear on their own at home without intervention. Now add to this a technology which gives us the ability to see all of those undiagnosed ear infections, and we have to muster even more willpower to resist the urge to treat them all. This is the same problem as we have encountered with PSA testing: be careful gathering data you don’t know how to handle.
But even without considering this important objection to improved data-gathering, there is another problem which stands in the way of this type of technology: reimbursement. It sounds great to enable people to avoid visits to the doctor’s office by having tools that previously were only accessible at an office visit. It sounds like a very good way to save money and wasted time spent in waiting rooms with outdated magazines. But this technology presumes that doctors will be willing to act on this information without seeing the patient in the office. It presumes we will be willing to offer free care. If the time I spend sifting through patient-collected data rises exponentially, the payment I get for that time cannot remain at the present level: zero.
If our goal (as it should be) is to spend less money on unnecessary care, we will get to it much faster if we somehow give proper incentive. Our encounter-based payment system stands in the way of any progress in this area. The only way most of us get paid is to see people and deal with problems. This makes doctors reluctant to offer any care outside of this setting, and puts undue pressure on intervention (to justify the encounter to the payors). Until our system puts more value on avoiding unnecessary treatment and keeping people well we will be stuck in this struggle between patients who want to avoid seeing the doctor and doctors who can’t afford to let patients do that….
“Turns out that while most of us (90%) would like be able to make a doctor’s appointment and check lab results online….85% of us also still want the option of be able to talk to our physician face-to-face. These are the finding from a recent 2012 study conducted by Accenture.””
What is significant about the finding cited above is that patients at least get it. They understand the value of a having a relationship with a knowledgeable physician or similar health care provider. In spite of, and for some, because of the plethora of health information outlets on the web people want to know that they always have access to your family doc when the chips are down.”
“Here’s what I mean…based upon some 20+ years working in health care:
From the get go…going back to Hippocrates…health and health care delivery has been about the relationships between people starting with the physician-patient.relationship.
The most important diagnostic tool a physician has at their disposal is not a smart phone…but their ability to talk with and observe patients verbal and non-verbal behavior.
“Talk” is not only how physicians diagnose problems and recommend the appropriate treatments…talk is also how patients are able to engage in the health care. Perhaps the most overlooked aspect of talk (and touch) during the medical exam is the therapeutic benefits patients derive from being able to express heart-felt fears and concerns to someone who hopefully cares.”
From the 4 June 2011 article at Medical News Today
…Lead author Robert E. Gramling, M.D., Sc.D., associate professor of Family Medicine at URMC, and colleagues with a special interest in palliative care, made several key discoveries:
- In 93 percent of the conversations, prognosis was brought up and discussed by at least one person, with the palliative care team broaching the issue 65 percent of the time. Also, the prognosis information focused more often on quality of life rather than survival, and on the unique individual rather than the population in general. Researchers noted that prior studies support the link between open and honest discussions about prognosis to clinical benefits.
- Both patients/families and physicians/nurses on the palliative care team tended to frame prognosis with more pessimism than optimism. This was unexpected and different than the usual patterns of communication, where talk of a serious illness tends toward avoidance or unbalanced optimism, researchers said. However, emphasizing accuracy during the palliative care consultation usually leads to treatment decisions that match patient preferences.
- The substance and tone of the conversations varied, depending on whether the patient was present and actively participating. For example, prognosis conversations with family members alone were more pessimistic and contained more explicit information. It is possible, researchers said, this type of conversation takes place out of respect for the patient, who might be sicker in this scenario, or is someone who prefers to avoid information.
- The closer to death, the more likely the palliative care physician was to foretell or forecast events. This might seem logical – that doctors would guide patients and families in what to expect as death approached – but in reality this vulnerable and frightening time is when families often report a void in communication. The URMC data suggests that palliative care consultations respond to this need….
And don’t miss the lively discussion at the end of the article..
When self-evident truth in medicine is systematically ignored (KevinMD.com article of June 3, 2012)
Some things in medicine are obvious. Despite the endless worship of ‘evidence-based’ medicine, and the constant barrage of studies on every conceivable topic, we do certain things because we know they just seem right. I take as evidence the fact that we daily try to save lives, devoting research time, untold gazillions of dollars and heroic clinical effort to our continued goal of staving off death. Why is this? Do we know that death is inherently worse than life? Well, since we can’t see beyond the grave, and can’t exactly engage in double-blind, placebo controlled studies about the after-life, the answer is “no.” But we assume that life is preferable to death, based on our feelings, our sense of the thing.
The same is true in our personal lives. No one can show me a scientific study that details why he or she married a particular person. No one can offer up a mole of affection for empiric analysis. And yet, we don’t doubt the existence of romance, or the reality of love.
And yet, medicine is filled with situations in which “self-evident truth” is systematically ignored, and those who believe in it intentionally and often viciously marginalized.
For example, after years of being told that physicians weren’t giving enough treatment for pain, and after years of clinicians saying, “yes we are, and too many people are addicted and abusing the system,” the data from CDC says that far too many are dying from prescription narcotics, far too many infants being born addicted, and far too many people, young and old, are using analgesics and other drugs not prescribed for them. To which many of us say, “duh!”
And then there’s the customer service model, the thing which causes clinicians to lose their jobs as satisfaction scores fall due to disgruntled patients (often upset over not receiving the drug they desired … see above paragraph). This is a darling of administrators. And it clearly has flaws…
From the National Library of Medicine (NLM) Director’s Comments (5/14/2012)
The success of medical treatment might improve if the outcomes for persons with multiple conditions, severe disability, and short life expectancy were more based on a patient’s (rather than a health care provider’s) goals, suggests a stimulating commentary recently published in the New England Journal of Medicine.
The commentary’s two authors note the primary outcomes for patients with multiple conditions, severe disability, and short life expectancy often are based on medically-posited, condition-specific protocols. The authors add treatment success often is envisioned as meeting short and longer-term clinical indicators.
David Reuben M.D. and Mary Tinetti M.D. write (and we quote): ‘rather than asking what patients want, the culture has valued managing each disease as well as possible according to guidelines and population goals’ (end of quote).
However, the authors explain for patients with multiple conditions, severe disability, and short life expectancy (and we quote): ‘the overall quality of care depends on more than just disease-specific care processes’ (end of quote). As an alternative, the authors suggest a more patient-centered option should focus treatment on individual tailored goals, which might be quite different than what health care providers admirably hope to achieve.
The authors (who are from the University of California-Los Angeles and Yale University respectively) provide several hypothetical examples where a patient’s goals do not match the clinical indicators physicians seek and there may be differences in how physicians versus patients perceive the ultimate success of medical treatment….
Overall, underlying the commentary’s thought-provoking ideas is the foundational importance of good communication between doctors and patients, which is the focus of MedlinePlus.gov’s talking with your doctor health topic page.
MedlinePlus.gov’s talking with your doctor health topic page provides an array of links to help you improve interpersonal communication with a health care provider. One highly useful site (from the Agency on Healthcare Research and Quality) provides 10 basic questions to ask a clinician that cover a wide range of medical situations. This website is available within the ‘overviews’ section of MedlinePlus.gov’s talking with your doctor health topic page.
A website from Harvard Medical School (available in the ‘related issues’ section) supplements the former site with specific questions about 40+ diseases and conditions that you can take with you to a doctor. Let’s Talk … and Listen also in the ‘related issues’ section helps you establish more rapport and shared decision making with a physician.
MedlinePlus.gov’s talking with your doctor health topic page additionally contains updated research summaries, which are available within the ‘research’ section. Links to the latest pertinent journal research articles are available in the ‘journal articles’ section. Links to related clinical trials that may be occurring in your area are available in the ‘clinical trials’ section. From the talking with your doctor health topic page, you can sign up to receive email updates with links to new information as it becomes available on MedlinePlus….
A laparoscopic robotic surgery machine. Patient-side cart of the da Vinci surgical system. Into the sealed Computer God Robot Operating Cabinet, as a Frankenstein slave, at night. Da Vinci Surgical System. (Photo credit: Wikipedia)
Robotic surgery has its place. However, robotic surgery is not superior to traditional surgery in every case or for every surgery candidate. It is best to discuss the pros and cons (and alternatives) of any surgical procedure with trusted health care professionals.
Discussion starters below under Related Resources.
Why I am posting this? Partly because a recent article in my local newspaper read more like an advertisement for robotic surgery than an unbiased news item. It seemed to have been written the surgeon interviewed (or at least had only one source of information — the surgeon who touted robotic devices). Am seriously considering a letter to the editor gently inquiring about their journalistic standards. I know they have a skeletal staff of reporters, and no longer have a staff librarian to do research. Still.
Skeptical Scalpel: Robots attack America, but Canada not so much
As of December 2011, 1548 surgical robots have been sold and installed in the United States as opposed to 16 in Canada.
The estimated population of the U.S is 313,388,000 and for Canada, 34,764, 600.
Canada has a population that is 11.1% of the U.S. population but Canada has only about 1% as many robots. Or put another way, Canada has 1 surgical robot for every 97 robots in the U.S….
The estimated population of the U.S is 313,388,000 and for Canada, 34,764, 600.
Canada has a population that is 11.1% of the U.S. population but Canada has only about 1% as many robots. Or put another way, Canada has 1 surgical robot for every 97 robots in the U.S.
California’s population is 37,691,912, which is about 3 million more than the population of Canada, but California, with 114 robots, has seven times as many robots as Canada..
Related Resources (will be adding resources included unbiased items about robotic surgery by the end of the week)
From Choosing Wisely – a Web site that aims to “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
Nine United States specialty societies representing 374,000 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.
What tests and procedures should patients and physicians talk about? Read the lists:
[Links at http://choosingwisely.org/?page_id=13]
American Academy of Allergy, Asthma & Immunology
American Academy of Family Physicians
American College of Cardiology
American College of Physicians
American College of Radiology
American Gastroenterological Association
American Society of Clinical Oncology
American Society of Nephrology
American Society of Nuclear Cardiology
From the 4 April 2012 blog post by NAHEED DOSANI, MD AND JEREMY PETCH at KevinMD.com
…Bloch points to a growing body of research evidence showing the impact of financial struggle on the risk of a variety of diseases (this research is largely Canadian, so US statistics will differ, though the themes are likely similar):
Cardiovascular disease: there is a 17% higher rate of circulatory conditions among the lowest income quintile versus the average
Diabetes: prevalence among the lowest income quintile is more than double the rate in the highest income quintile
Mental Illness: the suicide-attempt rate of those living on social assistance is 18 times higher than higher-income individuals
Cancer: low-income women are less likely to access screening interventions like mammograms or Pap Smears
Development: infant mortality is 60% higher in the lowest income quintile neighborhoods
Regardless of this compelling evidence, why is there a need to screen for poverty? “Simply because we don’t know which patients live in poverty and if we don’t ask, we won’t find out,” says Dr. Bloch. Since the recession of 2008, many hard-working people have been squeezed out of the middle class. A November 2011 report by Wider Opportunities for Women entitled, “Living Below the Line,” highlighted the fact that nearly half of Americans struggle to make ends meet. …
NCAAM (National Center for Complementary and Alternative Medicine) recently published these pages/articlers
- List the complementary health practices you use on your patient history form. When completing the patient history form, be sure to include everything you use—from acupuncture to zinc. It’s important to give health care providers a full picture of what you do to manage your health.
- At each visit, be sure to tell your providers about what complementary health approaches you are using. Don’t forget to include over-the-counter and prescription medicines, as well as dietary and herbal supplements. Make a list in advance, or download and print this wallet card and take it with you. Some complementary health approaches can have an effect on conventional medicine, so your provider needs to know.
- If you are considering a new complementary health practice, ask questions. Ask your health care providers about its safety, effectiveness, and possible interactions with medications (both prescription and nonprescription).
Don’t wait for your providers to ask about any complementary health practice you are using. Be proactive. Start the conversation.
NCCAM TiwtterChate – Join us for monthly Twitter Chats that cover a variety of health topics and complementary approaches. Each month, a different topic will be selected. An expert in scientific and health issues will be available to answer your questions. Most chats will occur on the last Thursday of each month at 1 p.m. ET. Dates, times, and topics may change, and will be announced on this page and through Twitter and Facebook.
Find us on Twitter: @NCCAM. To participate, use the hashtag: #nccamchat.
March 30, 2012 Time to Talk
Time to Talk Campaign—an educational campaign to encourage patients and their health care providers to openly discuss the use of complementary health practices.
April 26, 2012 Asthma and Complementary Approaches
May 31, 2012 Yoga
Patience Patients – Are e-Patients Waiting for e-Docs?
From the 25 January posting at Eye on FDA
Patients are changing. They are accessing medical information differently, they are storing it differently and they are consuming it more voraciously. This access to medical information and tools means that many patients are more medically conversant and knowledgeable than the patient of just five years ago. Medical literacy is likely on the rise.
It also changes the way physician and patient communicate. Five years ago, I never would have considered the need for email between my physician and myself, thinking it impractical. Today, I think a physician needs to have some portal of access for the exchange of data and information. Here are my readings – blood pressure, blood sugar, whatever… – for the week. The medical record will reflect information not just gathered at an exam in the office, but that gathered by my apps when I am not in the office. And when I’m diagnosed with a new condition, I fully expect either the physician or someone in his or her office to not only prescribe some medication, but to pull out an i-Pad to steer me to some good resources, including apps. If the condition is one where there are few treatment options and I’m expected to consider a clinical trial, the i-Pad should have a clinical trials app that lets us look at what’s available together….
- eHealth: patients are changing, but not (yet) the Physicians (scienceintelligence.wordpress.com)
- From Pinterest and Septris to the Patient of the Future (Science Blog)
“Are ePatients self diagnosing too much ? Too many people are not going to see their doctors on a regular basis and they need to be educated on why that is a bad idea. No printed or interactive forum can replace a trained medical professional. The Patient of the Future Like many “self-quanters,” Smarr wears a Fitbit to count his every step, a Zeo to track his sleep patterns, and a Polar WearLink that lets him regulate his maximum heart rate during exercise. Stanford University’s Septris app …”
Unnecessary reliance on screening tests and the underuse of personalized medicine are two major concerns I have with the present practice of medicine. Hence the selection of this article for a blog item.
Mayo’s Dr. Victor Montori and his team argue that medical intervention success is best be measured in holistic terms as death, quality of life, and ability to function. This is in direct opposition to current industry and professional guideline standards which emphasizes narrow (and often misleading) outcomes as blood pressure reduction, lipid levels, and glucose levels.
The team’s analysis with “10 commandments” for physicians is published in the 28 December 2011 article The idolatry of the Surrogate. The article, unfortunately, is only available through paid subscription through the BMJ (British Medical Journal – Helping Doctors Make Better Decisions).***
The commandments basically encourage physicians to be careful with statistical results from clinical trials, information from industry experts, and to treat and respect the patient as individual with treatment related statistics as guides.
On a related note, I am very impressed with folks who empower themselves in treatment decisions by keeping up with biomedical breakthroughs, new treatments, and new ways of looking at diseases. I have posted related blogs as ePatients: The hackers of the healthcare world and Meet e-patient Dave – a voice of patient engagement.
Here is the abstract of the article
Easier to measure surrogate outcomes are often used instead of patient important outcomes such as death, quality of life, or functional capacity when assessing treatments. John Yudkin, Kasia Lipska, and Victor Montori argue that our obsession with surrogates is damaging patient care
Diabetes care is largely driven by surrogates. The US Institute of Medicine defines surrogates as “biomarker[s] intended to substitute for a clinical endpoint [and] expected to predict clinical beneﬁt (or harm . . .) based on epidemiologic, therapeutic, pathophysiologic, or other scientiﬁc evidence.”1 In diabetes, concentrations of glycated haemoglobin (HbA1c) are used as a surrogate marker for outcomes that are important to patients, such as blindness or amputation. Other surrogates such as blood pressure, lipids, albumin excretion rates, and C reactive protein have been used to predict outcomes of cardiovascular disease and to guide clinical practice in people with or without diabetes. Much of the evidence for clinical interventions is based on their effect on surrogate outcomes rather than those that matter to patients such as quality of life or avoidance of vision loss or renal failure. Moreover, because these “hard” end points generally show much smaller responses to interventions than surrogate markers, many of the widely accepted strategies for diabetes may be based on artificially inflated expectations.
Recent studies have challenged the assumption that reliance on surrogates can accurately predict the effect of treatment on hard outcomes. There are the oral hypoglycaemic drugs that reduce HbA1c but increase the risk of cardiovascular events,2 antihypertensive drugs that do not reduce the risk of stroke,3 and drugs that improve cholesterol profiles but do not reduce cardiovascular events.4 Explanations for such phenomena include unwanted effects of the drug or an incomplete understanding of the pathophysiology of the disease.5 But why have …
Below are listed the the ten commandments**** with definitions and paraphrasing. I have forgotten much more than I have remembered from a college statistics class 30+ years ago! The “explanations” are a result of finding quality information on the Internet.
(For a great “translation” with less math, please go to the blog posting …Get Your Doctor to Treat You Right)
The New Therapeutics: Ten Commandments
- Thou shalt treat according to level of risk rather than level of risk factor.
Level of risk - these levels are experienced by everyone, not just those having the disease being treated
[good summary of risk levels (minimal, less than minimal, greater than minimal) ]
Risk factor -anything that makes it more likely you will get a disease, either something you do (smoking)or something you have no control over (as being over 50 makes it more likely you will get colon cancer. People should be given treatments based on the risks associated with the treatment on anyone,not individual factors (age, blood pressure, other conditions)
- Thou shalt exercise caution when adding drugs to existing polypharmacy.
Polypharmacy - (poly is Greek for many) Whenever a person is taking a drug, any additional drugs may interact and cause bad reactions, including death.
- Thou shalt consider benefits of drugs as proven only by hard endpoint studies.
Endpoint study – research study involving humans where the outcomes (results) directly address the question. For example, if a drug was tested on how it reduced heart disease, the hard endpoint would be the reduction of heart disease. However, hard endpoint studies are usually not accomplished in short periods of time, because it takes time for diseases to develop. This paragraph sums up endpoint workarounds well.
From Deciphering Media stories on Diet (Harvard.edu)
4. Did the study look at real disease endpoints, like heart disease or osteoporosis? Chronic diseases,
like heart disease and osteoporosis, often take many decades to develop. To get around waiting that
long, researchers will sometimes look at markers for these diseases, like narrowing of the arteries or
bone density. These markers, though, don’t always develop into the disease.
- Thou shalt not bow down to surrogate endpoints, for these are but graven images.
Surrogate endpoint – a substitute endpoint in a clinical trial. It is not the item being measured directly (as heart disease), but an item related to what is being studied (as blood pressure). During the study these substitutes will be used to check on the health of the people in the clinical trial, the usefulness of the drug being treated, and if there are any complications. Surrogate endpoints are substitutes for (true) clinical endpoints (as survival for 5 years after the treatment). Surrogate endpoints don’t always guarantee a clinical endpoint (just because blood pressure goes down, heart disease may not be treated). However studies with good endpoints are expensive (require testing on many people) are take long periods of time.
[Adapted from an eHow article with good references]
- Thou shalt not worship Treatment Targets, for these are but the creations of Committees.
Correlation doesn’t always meant causality!A treatment target is a goal of a treatment intervention. An example would be to reduce a specific protein in order to prevent a specific cancer (Potential New Treatment Target for Retinoblastoma, 13 January 2012 Medscape article) . The “cause/effect” relationship between something measurable (as a protein) and a disease may not truly exist. It is also possible that the presence of the protein and the onset of a disease may be due to other factors in a web of events.
- Thou shalt apply a pinch of salt to Relative Risk Reductions, regardless of P values, for the population of their provenance may bear little relationship to thy daily clientele.
Relative Risk - The number of times more likely (RR > 1) or less likely (RR < 1) an event is to happen in one group compared with another. [From the BMJ glossary]
P value – a number used to show how a variable (as a drug treatment) has a different result thano variable (no treatments). So, a high P value would seem to point to an effective drug treatment.
- Thou shalt honour the Numbers Needed to Treat, for therein rest the clues to patient-relevant information and to treatment costs.
The Numbers Needed to Treat (NNT) tells how many patients need a specific treatment in order to prevent an additional bad outcome (as a heart attack or stroke). So if a drug has an NNT of 10, 10 people have to be treated with the drug in order to prevent one additional bad outcome.
For example, if a drug is found to reduce the risk of a bad outcome from 50% to 40%, the absolute risk .1 (the difference). And the NNT is the inverse of the absolute or 10. [From Numbers Needed to Treat (Patient.co.UK)
- Thou shalt not see detailmen, nor covet an Educational Symposium in a luxury setting.
Detailmen are pharmacy representatives who present doctors with their company's drug information with the aim of persuading the doctor to presribe their drugs. These representatives often sponsor educational talks (often "focusing" on conditions rather than drugs) at physician meetings. These "luxury settings" may included free buffets and hospitality rooms. [From Influencing Doctors :How Pharmaceutical Companies Use Enticement to 'Educate' Physicians (ABC News)]
- Thou shalt share decisions on treatment options with the patient in the light of estimates of the individual’s likely risks and benefits.
- Honour the elderly patient, for although this is where the greatest levels of risk reside, so do the greatest hazards of many treatments.
*** Click here for suggestions on how to get this article for free or at low cost.
In past blogs I have posted items on initiatives for the wider sharing of scientific articles to the public with subsidies, open access, etc.
****Richard Lehman’s Journal Review – 3 January 2012
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amednews: Why patients are turning less to media and friends for health information :: Dec. 26, 2011 … American Medical News
Excerpts from the 26 December 2011 news item of the American Medical Association (AMA)
Consumers’ access to physicians and the quality of information available are affecting their level of interest in seeking outside guidance on their conditions.
By PAMELA LEWIS DOLAN, amednews staff. Posted Dec. 26, 2011.
As patient visits to physicians have declined, so has their interest in finding information relating to their health.
The waning interest in information-seeking as patient visits fall is what the Center for Studying Health System Change called a “surprising” conclusion to a survey of 17,000 patients released in November. Visits to physicians dropped 4% between 2007 and 2010. Meanwhile, the percentage of American adults seeking information about a personal health concern in the previous 12 months decreased from 55.5% to 50% in the same period, it said.
Analysts said there probably are multiple reasons for that. The trend could reflect that when patients are less able to see a physician, they are less likely to be engaged in their health. It could be that with physician visits down, patients have more time to spend with their doctor, meaning they have less of a need for outside sources of information.
And they said the decline could reflect that so much information is available — and so much of it conflicting — that some overwhelmed patients may be opting out altogether from researching their health.
For physicians, analysts said, the implication of the study is that when patients come into their offices, they are going to rely on them more than ever for help in managing their health.
1 in 5 patients has delayed or canceled a doctor visit, medical test or procedure in the past year.
The sources of information the center studied were the Internet, print media, television and radio, and friends and relatives. Internet was the only source that went up, to 32.6% from 31.1%. But center researcher Ha T. Tu wrote that the growth failed to keep pace with a strong rise in residential broadband Internet access, which went up from 47% to 66% between 2007 and 2010….
Read the entire news article