Sunday, February 17, 2013

Doctors have all sorts of excuses for poo-poohing users' ratings online because they want to silence patients

This news report by Ken Terry points us to a cluster of problems on how patients get to be part of the patient-doctor dialogue in a way that is not overwhelmed by thechnologistic newspeak — "patient engagement" and "physician-patient communications" where the patient is to be "engaged" by the doctor (which still leaves a lot of room for manipulation and bullying by doctors) and where the physician comes first, not the patient, while the problem is the physician's need to communicate with the hapless patient, who in turns needs to be patient, and not an active iformative party to a dialogue in which both sides communicate. Real communication of the explicitly patient-doctor dialogue kind begins with the patient and the opening, if necessary, by the doctor for the patient to lead the way (even where shy or intimated) in the conversation. The patient has valuable info which only she or he can give the doctor, under what shoud be normal circumstances. The doctor in the beginning of the relationship shoud be a listener, thinker, and learner. Most important of all perhaps is the patient's development of the narrative of her illness, not the doctor's imposition of a narrative out of his genomic studies in the case of cancer patients, or blood-suger samples and stats in the case of diabetes patients.
See our earlier ruminations on the report of Dr Marco Annoni et al, in the work of the Medical Humanities approach to medicine even in the case oncology/hematology which had been quite dismissive of the patients' narrativization of their illness, and the imposition of the doctors' narrative on the basis genetics/genomics studies that disappeared the patients' narratives, erasing the patient along with her/his narrative and imposing the purely scientistic narrative developed with hi-technology according to the philosophy of medicine of the doctor alone. I am currently in that position, once again, in relation to the diabetes element in my illness. Questions like my life-horizons, philosophy and ethics of my own longevity, and my right to die with dignity at the time and in the place of my own choosing has been set at nawt by know-it-all naturalistic scientistic medicine that pretends omnisience and ends up a function of the nanny-state, not an aid to my own flourishing for perhaps a few more years before I go willing and with joy to meet my Maker. Medicine today needs its own inner reformation.

— Albert Gedraitis

InformationWeek HealthCare (Feb18,2k13)

Doctors Take Dim View

Of Users' Online Ratings

Doctors question small sample sizes and what ratings measure, but many peek at their own report cards anyway.

Ken Terry

Physician leaders are wary of online physician ratings but are interested in what patients have said about them, according to a recent survey by the American College of Physician Executives (ACPE). Moreover, most of the respondents agreed that ratings will become more important in the era of value-based reimbursement.

Only 12% of the physician leaders said that consumer rating websites were helpful and should be made more available. Twenty-six percent said they were a nuisance and provided no benefit, and 29% said that the sites were not used very much by patients and didn't really affect their organizations.

MORE HEALTHCARE INSIGHTS

About 55% of the physicians believed 25% or less of their patients had used an online physician rating site, and 35% of respondents estimated that between 25% and 50% of patients visited those sites.

According to a recent Pew Internet survey, only 20% of Internet users -- a subset of all consumers and, therefore, of patients -- had consulted online reviews of particular drugs or medical treatments, doctors, hospitals or other providers. Just 3 % to 4% of Internet users had posted reviews of healthcare services or providers.

[ Doctors interact with patients online more than ever. Read HealthTap, Avvo Marriage Gives Consumers More Online Docs. ]

The small sample size is one reason why physicians distrust online consumer ratings, said Seth Glickman, MD, assistant professor of medicine at the University of North Carolina in Chapel Hill, in an interview with InformationWeek Healthcare. Glickman, an expert on patient experience surveys, pointed out that physicians also are concerned about the possibility that competitors might plant negative reviews. And there are concerns, he said, about whether the sites are measuring what makes patients happy or what represents good clinical care.

"For example, giving a patient an antibiotic prescription for a cold is not good medicine, but there's some evidence showing that when patients receive that prescription, they feel they've received better care," said Glickman.

Some of these issues carry over to external physician ratings that are more scientifically valid, such as those from Press Ganey, the National Committee on Quality Assurance, the Joint Commission and some health plans. The ACPE survey found that only 29% of respondents viewed these ratings as useful, while 14% regarded them as a nuisance and a time waster. Forty-one percent had a neutral opinion about these report cards.

In contrast, 75% of the respondents said their organizations rated physician quality internally, and 71% of the physician leaders said these ratings were valuable and that they supported their use.

Despite the overwhelming rejection of online consumer ratings of physicians, two-thirds of the respondents said they had viewed their own ratings on websites such as Healthgrades, Vitals and Angie's List. Of those who had looked at their report cards, 39% agreed with them and 42% partially agreed with them. Only 19% said the reviews were completely wrong.

This did not surprise Glickman. "Many of us are aware of the things we do well and the areas we need to improve on," he said. "When you have a well-designed survey instrument and you amass feedback from a critical mass of patients, you can see those themes emerge. It's a good sign that physicians are at least open to the possibility of what that information can provide and use it as a platform to figure out a way to improve the care they deliver."

As more consumers write and read reviews of physicians on these websites, he added, doctors will start to take them more seriously. "The more information that's available in the public domain, the more likely physicians are to review the information and to believe that it's valid, based on larger samples."

Meanwhile, he said, physicians should bear in mind that there are areas of health care, such as patient engagement and physician-patient communication, where consumer ratings can be insightful. "There's some good evidence that when we do better in those areas, we can deliver higher quality care at lower cost. Patients can provide valuable feedback in those areas, which can lead to higher quality care," he said. Of the 730 physician leaders who participated in the ACPE poll, 31% worked for health systems, 24% for hospitals, 20% for group practices, and 9% for academic health centers. Twelve percent were in private practice.

Clinical, patient engagement, and consumer apps promise to re-energize healthcare. Also in the new, all-digital Mobile Power issue of InformationWeek Healthcare: Comparative effectiveness research taps the IT toolbox to compare treatments to determine which ones are most effective. (Free registration required.)

Monday, December 17, 2012

Red spots on your legs? A doctor zeroes-in on Schamburg's Disease — it's not a sham, and not a bad hamburger!

In Orlando, Florida, The Sentinel newspaper runs a regular column, "Ask Lake Doctors," and a recent article there attracted my attention. The article seems to have been around for a long time — since 1999, so we don't know whether it's really uptodate, but it carries the answering doctor's reply to a question by a 40-years old woman (she's older now for sure!). What attracted my attention was a condition I have on my legs, due to diabetes (I'm 72 now). Actually, I had never even heard of Schamberg's Disease, so I thawt I'd check out the article, and then I decided to pass it on to all of our readers of Christian Medical Observations & Ruminations. I don't practice medicine, of course, so I'm not offering advice; and if the thawts of Dr Richard Bosshardt (an MD, I presume) sounds valuable to you, check his remarks with your own family doctor — as a matter of fact, always consult your family doctor before taking any advice you get online. Oh, one other thing, if the look of the spots troubles you, don't hold back from doing something about that problem. Because it has become a problem to you. It's okay to do something with your doctor's advice, even tho it's "just cosmetic." You need to feel comfortable with how you look, lower legs too. If you're obsessing about your looks, you probably need to see a shrink. The path of constant cosmetic surgeries is pathological. Get help.

— Albert Gedraitis

Orlando Sentinel (Dec17,2k12)

Schamburg's Disease Causes Red Spots On The Legs

by Dr. Richard Bosshardt, Special to The Orlando Sentinel
November 3, 1999

Question:

I am a woman in my 40s who recently developed red spots on my legs. These began to spread and now cover most of my legs. They do not itch or hurt but are very unsightly.

I went to a dermatologist who told me I have something called Schamburg's disease and there is not much that can be done for it.

Answer:

Schamburg's disease is one of several progressive, pigmented purpuric dermatoses. This sounds like a mouthful, but all it means is a skin disorder characterized by the developement of red or purple spots that may become progressively worse with time.

Purpura are small colored spots on the skin caused by collections of red blood cells. These can be caused by any trauma that ruptures the tiny capillaries beneath the skin. They also can be caused by conditions in which the capillaries become unusually fragile or leaky.

A deficiency in the normal clotting factors in the blood can lead to spontaneous bleeding, or bleeding with minimal trauma [minimal external cause]. Purpura can be distinguished from discoloration caused by enlarged or dilated capillaries under the skin by a simple test.

If one takes a glass microscope slide and presses it over the spot, the spot will blanch and disappear if the blood is in a vessel because the pressure squeezes the blood out of that area of the vessel. With purpura, since the blood cells are not in a vessel, the spots will not blanch.

The cause of Schamburg's disease is not known. It is more common in older patients and is only infrequently seen in patients younger than 40. It seems to be seen more often in people who are on their feet a lot. This is probably because blood pressure in the tiny skin capillaries is highest in the legs because of the effect of gravity on the tissues.

The disease does not appear to be caused by trauma, although once the condition is present, trauma to the skin may cause more spots to form.

The underlying problem seems to be one of an inflammation of the tiny skin capillaries. If a biopsy of the skin is taken, the capillaries look more bent and twisted than normal.

This may affect blood flow through them as the red blood cells try to pass through the tortuous channels. The inflammation of the vessels also makes them ``leaky,'' allowing red blood cells to pass through them into the surrounding tissues.

The course of Schamburg's varies. But typically the spots arise without any apparent cause, spread and increase in number for a period of several weeks and then begin to fade away.

This process may take four to six weeks. The spots usually remain in the lower legs below the knees, but in more severe cases they can extend up the legs and onto the lower torso. The fading of the spots is a result of the absorption of the blood cells by the tissues over time.

Unfortunately, as the spots fade, they may leave a brown pigmentation in the skin.

Red blood cells are red because of the hemoglobin pigment inside them. When hemoglobin is oxygenated, it is bright red, which is why arterial blood - which carries oxygen to the tissues - is bright red.

Hemoglobin is an iron pigment, and when red blood cells break down and are absorbed, the iron pigment can remain behind and stain the skin a brown color. This can happen from any condition in which bleeding into the skin occurs, such as a bruise. This brown color in the skin usually fades. But that can take a year or more, and sometimes it never fades away completely.

There is no known consistently effective treatment for Schamburg's. Vitamin C, about 1,000 mg per day orally, has been beneficial in some people in stabilizing the process.

We know that people with vitamin C deficiency are prone to bleed spontaneously. Because it seems to be an inflammatory process, steroids, which are the most potent anti-inflammatory agents we have, may help.

During the early phase of the disease, when new lesions are forming, a short course of high-dose oral steroids may help.

These are usually given for seven days on a tapering schedule, with the highest dose taken the first day and lower and lower doses taken on subsequent days.

Topical steroids have been used, too. The most effective ones are the stronger prescription formulations, such as Lidex and Halog.

When hyperpigmentation occurs from the brown iron pigment, creams containing chemicals known as hydroquinones can be tried. These are skin lighteners sometimes used for post-inflammatory skin pigmentation, such as from acne, and pigmentation that sometimes occurs with pregnancy and birth-control pills.

Unfortunately, the pigment from purpura tends to be found in the deeper levels of skin, and the hydroquinones are less effective for these.

One final way to try to eliminate brown areas is with the use of a specific laser, the pulsed dye laser, which may selectively target the pigment deposits without damaging the overlying skin.

In the presence of purpura without an obvious cause, it is worth considering having a skin biopsy and hemotologic work-up to be sure some other cause of the spots is not at work. You might ask your dermatologist about this.

If you are on medications, check to see that these do not affect bleeding. Let your doctor know if you are on any herbal remedies or supplements.