November 18th, 2008 by Dr. Val Jones in Opinion, Quackery Exposed
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The internet, in democratizing knowledge, has led a lot of people to believe that it is also possible to democratize expertise.
– Commenter at Science Based Medicine
Regular readers of this blog know how passionate I am about protecting the public from misleading health information. I have witnessed first-hand many well-meaning attempts to “empower consumers” with Web 2.0 tools. Unfortunately, they were designed without a clear understanding of the scientific method, basic statistics, or in some cases, common sense.
Let me first say that I desperately want my patients to be knowledgeable about their disease or condition. The quality of their self-care depends on that, and I regularly point each of my patients to trusted sources of health information so that they can be fully informed about all aspects of their health. Informed decisions are founded upon good information. But when the foundation is corrupt – consumer empowerment collapses like a house of cards.
In a recent lecture on Health 2.0, it was suggested that websites that enable patients to “conduct their own clinical trials” are the bold new frontier of research. This assertion betrays a lack of understanding of basic scientific principles. In healthcare we often say, “the plural of anecdote is not data” and I would translate that to “research minus science equals gossip.” Let me give you some examples of Health 2.0 gone wild:
1. A rating tool was created to “empower” patients to score their medications (and user-generated treatment options) based on their perceived efficacy for their disease/condition. The treatments with the highest average scores would surely reflect the best option for a given disease/condition, right? Wrong. Every single pain syndrome (from headache to low back pain) suggested a narcotic was the most popular (and therefore “best”) treatment. If patients followed this system for determining their treatment options, we’d be swatting flies with cannon balls – not to mention being at risk for drug dependency and even abuse. Treatments must be carefully customized to the individual – genetic differences, allergy profiles, comorbid conditions, and psychosocial and financial considerations all play an important role in choosing the best treatment. Removing those subtleties from the decision-making process is a backwards step for healthcare.
2. An online tracker tool was created without the input of a clinician. The tool purported to “empower women” to manage menopause more effectively online. What on earth would a woman want to do to manage her menopause online, you might ask? Well apparently these young software developers strongly believed that a “hot flash tracker” would be just what women were looking for. The tool provided a graphical representation of the frequency and duration of hot flashes, so that the user could present this to her doctor. One small problem: hot flash management is a binary decision. Hot flashes either are so personally bothersome that a woman would decide to receive hormone therapy to reduce their effects, or the hot flashes are not bothersome enough to warrant treatment. It doesn’t matter how frequently they occur or how long they last. Another ill-conceived Health 2.0 tool.
When it comes to interpreting data, Barker Bausell does an admirable job of reviewing the most common reasons why people are misled to believe that there is a cause and effect relationship between a given intervention and outcome. In fact, the deck is stacked in favor of a perceived effect in any trial, so it’s important to be aware of these potential biases when interpreting results. Health 2.0 enthusiasts would do well to consider the following factors that create the potential for “false positives”in any clinical trial:
1. Natural History: most medical conditions have fluctuating symptoms and many improve on their own over time. Therefore, for many conditions, one would expect improvement during the course of study, regardless of treatment.
2. Regression to the Mean: people are more likely to join a research study when their illness/problem is at its worst during its natural history. Therefore, it is more likely that the symptoms will improve during the study than if they joined at times when symptoms were not as troublesome. Therefore, in any given study – there is a tendency for participants in particular to improve after joining.
3. The Hawthorne Effect: people behave differently and experience treatment differently when they’re being studied. So for example, if people know they’re being observed regarding their work productivity, they’re likely to work harder during the research study. The enhanced results therefore, do not reflect typical behavior.
4. Limitations of Memory: studies have shown that people ascribe greater improvement of symptoms in retrospect. Research that relies on patient recall is in danger of increased false positive rates.
5. Experimenter Bias: it is difficult for researchers to treat all study subjects in an identical manner if they know which patient is receiving an experimental treatment versus a placebo. Their gestures and the way that they question the subjects may set up expectations of benefit. Also, scientists are eager to demonstrate positive results for publication purposes.
6. Experimental Attrition: people generally join research studies because they expect that they may benefit from the treatment they receive. If they suspect that they are in the placebo group, they are more likely to drop out of the study. This can influence the study results so that the sicker patients who are not finding benefit with the placebo drop out, leaving the milder cases to try to tease out their response to the intervention.
7. The Placebo Effect: I saved the most important artifact for last. The natural tendency for study subjects is to perceive that a treatment is effective. Previous research has shown that about 33% of study subjects will report that the placebo has a positive therapeutic effect of some sort.
In my opinion, the often-missing ingredient in Health 2.0 is the medical expert. Without our critical review and educated guidance, there is a greater risk of making irrelevant tools or perhaps even doing more harm than good. Let’s all work closely together to harness the power of the Internet for our common good. While research minus science = gossip, science minus consumers = inaction.
October 29th, 2008 by Dr. Val Jones in Celebrity Interviews
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Joan Lunden
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Former Good Morning America host, Joan Lunden, is getting behind the personal health record industry. As the daughter of a physician, Joan grew up believing that she’d become a doctor one day. She told me that all that came to a screeching halt when she “realized that she didn’t like blood or stitches.” But Joan has always kept women and children’s health advocacy initiatives close to her heart. She will soon be starring in a new Lifetime TV show called Health Corner. I caught up with her about her recent work with PassportMD.
Listen to the podcast here, or read a summary of our discussion below.
Dr. Val: Tell me about your experiences in taking care of your mom, and what led you to become involved with a PHR company.
Lunden: I lost my brother to type 2 diabetes a little over a year ago. As it happens, he had been managing my mom’s medical care, and so with his loss I needed to step in and take it over. Of course she lives on one coast and I live on the other. I’ve got 4 little kids (two sets of twins) and three young adult children. It becomes really daunting to keep track of everyone’s medical care. Around that time I met some folks from PassportMD, and when they showed me how easy it could be to keep everyone’s records in one place, I said, “this is exactly what I need.”
I think I’m really typical of a lot of women out there in what we call “the sandwich generation.” Today a high percentage of women with small children are working outside of the home. It’s really a lot to juggle – a career, raising a family, and getting everyone to the doctor on time – forget about getting YOU to the doctor on time. As good as we women are at nurturing others, we tend to be at the bottom of our own to-do lists.
What I really love about PassportMD is not just the organization (I can immediately see all my kids’ vaccination schedules for example) but the fact that I’m building a family medical history. It’s so important to know your family history so that you can engage in appropriate screening tests and take preventive health measures. This PHR even sends you reminders when its time for immunizations, mammograms, or other appropriate screening tests.
Dr. Val: As a doctor I’ve encountered resistance to PHRs from patients because they don’t want to have to enter all the data themselves. They’d like it to be auto-populated with their medical record data so that they don’t have to start from scratch. Has the PassportMD tool solved that problem?
Read more »
October 11th, 2008 by Dr. Val Jones in Expert Interviews
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Photo Credit: FUS Foundation
Did you know that one in three women will have a hysterectomy (surgical removal of the uterus) by age 60? It is the second most common surgical procedure among women in the United States. But the question is: are they all necessary? I had a fascinating interview with Dr. Elizabeth Stewart from the Mayo Clinic about some of the reasons behind the potential excess of this type of surgery. You may be surprised to learn that insurance reimbursement guidelines may have something to do with it.
Dr. Val: Women often undergo hysterectomies to treat painful fibroids (benign growths in the uterus). What do women need to know about their fibroid treatment options?
Dr. Stewart: They need to know that they have many different treatment options for uterine fibroids. A hysterectomy is not their only choice. Women should ask their doctor to explain all their options and also make sure that they have the correct diagnosis – menstrual cramping and heavy bleeding doesn’t necessarily mean you have fibroids.
Nowadays we can treat fibroids with hysterectomy, uterine artery ablation, or MRI-guided focused ultrasound surgery (MRgFUS). MRgFUS is a nearly painless procedure where we use focused ultrasound waves to destroy fibroid tissue via heat transfer. I know one woman who went back to work 2 hours after the procedure. Recovery from a hysterectomy or uterine artery ablation can take weeks to months.
Dr. Val: What are some of the advantages and disadvantages of treating fibroids with focused ultrasound? Read more »
October 7th, 2008 by Dr. Val Jones in Medblogger Shout Outs
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Thanks to Dr. Cris for hosting me during my “homeless” period. Dr. Cris blogs from Australia:
Thanks to DrVal for providing this cartoon by way of a guest post. She is currently blogless and is taking a round the world blog tour. Look out for Val at a medblog near you!
August 22nd, 2008 by Dr. Val Jones in Uncategorized
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My friend and fellow blogger Dr. Kevin Pho just published an op-ed in USA Today explaining why cutting physician salaries will not reduce healthcare spending. Here is an excerpt:
The number of physicians who do not accept new Medicare patients is dramatic; in states like Texas, this number can exceed 40%. No wonder, as Medicare pays less than half of doctors’ fees. This scenario comes as a record number of Boomers approach Medicare age.
Those without Medicare are not spared the consequences. Seniors sometimes delay their care, leading to expensive treatment in the emergency department. Doctors who lose money seeing Medicare patients could pass on the costs to the privately insured.
According to the Kaiser Family Foundation, there are more significant drivers of health costs, including new prescription drugs, technology and administrative needs. Princeton economist Uwe Reinhardt estimates that physicians’ take-home pay represents roughly 10% of national health care spending. Cutting physician pay by 20% would only reduce spending by 2%.
I’ve also blogged about the plight of primary care physicians – as their salaries do not allow them to meet their high overhead costs.
As decreases in Medicare reimbursements begin to make it impossible for small practices to afford their supplies, rent, and coding and billing staff, more physicians will simply stop accepting Medicare patients. This means that the taxes that Baby Boomers have been paying all their lives will essentially not result in a guarantee of good medical coverage in their retirement. They may need to pay out-of-pocket to purchase additional insurance or to have a good primary care physician available to them 24-7.
Concierge practices like Alan Dappen’s may fill a gap in care. With full price transparency, availability via email and phone 24 hours a day, 7 days a week, house calls, and affordable fees – savvy patients will realize that his services are well worth the small out-of-pocket expense (on average, his patients spend $300/year on his services).
What’s my bottom line? I think we all need to save as much as we can of our own personal funds in case government programs do not provide us with adequate health coverage in our futures. At least if we grow our own healthcare nest egg, we’ll have more care choices in the future. And those choices may one day be a matter of life and death.
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
