January 29th, 2008 by Dr. Val Jones in Health Policy
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I attended an excellent brown bag lunch with Dr. Greg Downing today. He’s the program director for the U.S. Department of Health and Human Services’ (HHS) Personalized Health Care Initiative. He spoke about some of the challenges associated with incorporating genetic test results into a personalized health record, and how consumer demand is fueling biotech companies to offer tests long before their clinical significance has been determined.
Here are some interesting statistics that Dr. Downing mentioned:
Only 15% of Americans have their medical records in an electronic format that they can access
About 30% of clinical decisions are based upon evidence from quality research
At least 70% of genetic tests are requested by patients, rather than clinicians
At the same time, HSS Secretary Mike Leavitt has issued this vision statement about personalized health care:
“Personalized health care is providing the right treatment, for the right patient, for the first time, every time.”
So what we have here is an incredible gap between our aspirations and reality. While we want to leverage genetic information for disease prevention purposes, subjecting the entire population to a “needle in a haystack” search for disease predictors is extremely expensive. In addition, genes rarely provide black and white answers regarding disease risk. Sure there’s the Huntington’s Disease gene (which really does have a nearly 100% correlation with the development of the disease), but the vast majority of genes have much more gray significance, with shades of predisposition and uncertainty.
Biotech companies sense America’s eagerness to peer into its health future, and are actively engaged in direct to consumer advertising. With tests ranging in price from $300-$3000 dollars, and wealthier clients willing to pay for the tests, they stand to make a good profit without clear improvements in health outcomes, or patients even knowing how to interpret their results.
Connecticut Attorney General Richard Blumenthal (D) recently said his office is investigating the accuracy of claims Myriad makes about the test in the ads, including issuing a subpoena for information about the ads. Blumenthal said his office has received complaints from professional caregivers, clinicians and scientists who believe the test has a “very high potential for misinterpretation and overreaction.”
In a rather extreme case of putting the cart before the horse, a potential susceptibility to suicidality (while on particular anti-depressants) was linked to a certain gene sequence. The day after the publication of this preliminary research one company was offering the genetic test directly to patients for $500/test.
So ultimately I agree with Dr. Downing’s cautionary message: let evidence based medicine be the foundation upon which personalized medicine is built. Mad dashes for genetic enlightenment don’t mean much if we don’t know how to interpret the test results. And let’s not forget the role of environmental factors in our health. You may have longevity genes, but if you’re engaged in risky behaviors, what good are they?
I do believe that the study of genetics is critical to our understanding of health and disease, but we need to do the research to learn how to leverage what we learn. Research is costly and slow, but the rewards are worth the investment. If you are going to undergo genetic testing online, make sure that you do so with a reputable company like DNA Direct that offers evidence-based tests with genetic counseling as part of the package, so that you will know what your test(s) mean. Of course, the best plan is to discuss genetic testing with your doctor.
And as for Secretary Leavitt, I applaud his vision and look forward to the day when we’ll all have access to our health information online, and we’ll receive the right treatments at the right time, every time… Let’s just say we’re not there yet.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
January 26th, 2008 by Dr. Val Jones in Health Policy, Opinion
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I had a really great conversation with iHealthBeat reporter Kate Ackerman recently. She summarized our conversation
in an online article and I’ve copied some of it here. Please check out the full article for the entire interview.
Consumer Demand Fueling Online Health Care Market
by Kate Ackerman, iHealthBeat Associate Editor
As patients increasingly turn to the Internet for health care information and online tools to manage their health, many companies, both new and old, are stepping up to meet the consumer demand.
It is still too early to tell which companies will be successful and how the Internet-savvy health care consumer will transform the patient-physician relationship, but the trend has captured the interest of many health care insiders.
Val Jones, senior medical director of Revolution Health and author of a blog called “Dr. Val and the Voice of Reason,” spoke to iHealthBeat about the online health care market, physician concerns about patients relying on the Internet and the role of medical blogs.
…
A recent Harris Interactive survey found that the percentage of U.S. adults who looked for health care information online increased from 72% in 2005 to 84% in 2007. Why do you think more and more consumers are turning to the Internet for health information?
I think it’s partially because more and more consumers are turning to the Internet for information, period. Online information is incredibly convenient, served up lightning fast and has revolutionized how we research everything from buying toasters to finding a doctor. Of course, health is much more serious and complicated than purchasing products, so consumers should be very wary of the source of their health information.
Do you see a generational divide in the people using Revolution Health?
We primarily appeal to everyone between the ages of 20 and 60, though women conduct more health searches than men. The only age gaps are related to the medical subjects being researched. Clearly, not too many 20-somethings are reading about menopause, and not too many 50-year-olds are reading about college stress. Otherwise, all of our community tools and groups are fair game for people of any age. We have 60-year-olds blogging and enjoying discussion groups, and 20-year-olds posting forum questions too. It’s wonderful to see the generations interacting online and learning from one another.
New York orthopedist Scott Haig in November wrote an essay in Time Magazine complaining about patients who research their symptoms, illnesses and doctors online before seeking treatment. What are the downsides to patients searching for health care information online?
I think Dr. Haig’s essay has been somewhat misinterpreted because he was focusing on a specific patient with a serious disorder. My favorite quote from Dr. Haig’s article is that “the role of the expert is to know what to ignore.” I think the major downside for patients searching for health information online is that it can be difficult to figure out what’s contextually relevant to them. Aside from that, the next major downside is that there are snake-oil salesmen out there preying on the frustrations that we all have about our broken health care system and promising “miracle cures” and fueling mistrust in doctors.
What can be done to ease concerns from physicians, like Haig, about consumers relying on the Internet for health information?
Educated patients are a pleasure to work with, but misinformed patients require lots of extra help. The hours we spend every week dispelling urban legends and Internet-fueled medical myths is really mind-boggling. Physicians are naturally protective of their patients and don’t want them to be duped or misled.
From Google to Microsoft, companies are beginning to recognize an opportunity in the online health care market. Is there enough room for all of these companies? What will make successful ventures stand out from the rest of the pack?
There’s as much room as consumer demand will fuel. However, only the largest and most innovative companies will ultimately survive long term. While we’re all waiting for the government to create standards for health information and the creation of interoperability rules, successful companies will meet the needs of today’s consumer. Small but practical tools and innovations will keep the companies solvent while we work toward the holy grail of a common health information platform for all the stakeholders.
Medical blogs seem to have taken off in recent years. Who do you think the intended audience is?
Actually, while there are an estimated 70 million blogs out there, only a few hundred doctors are blogging. That’s a huge discrepancy, and I don’t think we’re even at the beginning of the wave of medical blogging that will inevitably occur as doctors enter the Web 2.0 world. The first pioneers of the medical blogosphere are writing mostly for their peers, though patients find their blogs very engaging and read them as well. Very few medical bloggers write specifically for consumers.
What are your predictions for the online health care market in 2008 and beyond?
With decreasing access and increasing patient loads, I think we’re going to see the consumer-driven health care movement take center stage. Patients are going to need to “do it themselves” a lot of the time (meaning manage their own health information, teach themselves about disease management and make financial plans to take care of their own needs if the government cannot afford to do so).
Another trend I have my eye on is the retainer medicine movement. As primary care physicians continue to be squeezed out of existence by decreasing Medicare reimbursements, they are beginning to join an “off-the-grid” group of providers who simply do not accept insurance.
As more PCPs create retainer practices, I think IT solutions will really take off. Online tools that simplify their practices and speed up their patient communication will be welcomed and encouraged.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
January 25th, 2008 by Dr. Val Jones in News
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I spent a year working in a vaccine research laboratory at the Mayo Clinic. My project involved analyzing the DNA of military personnel who had died of the measles in the early 20th century. Strangely enough, the military saved small pieces of their flesh embedded in paraffin wax (and frozen) for future study. I guess that “future study” was my research project.
I must admit that I felt a little bit creepy as I cut tiny slivers of tissue out of the waxy fossils. I wondered about the lives of the tissue’s original owners. Who were these soldiers? Did their families still think of them? Did they leave wives and children behind?
Well, as it turned out, most of the tissue samples had a little piece of DNA in common and it was pretty exciting to discover what may have been a genetic susceptibility to this particular virus. Figuring out why some people survive the measles while others are overcome and die from it can be the turning point in understanding how to protect future generations from its ravages.
Today I read about some new research linking susceptibility to the influenza virus to certain family lineages. This makes perfect sense, since our body’s ability to defend itself against disease is largely based on our genetic code. However, we’re only just beginning to unwrap the subtle role of each piece of DNA code in our immune function. The complex interactions of microscopic proteins and chemicals in our bodies is much more difficult to interpret and predict than we can even fathom. Nonetheless, it’s really exciting that we’re inching closer to being able to protect ourselves from scary viruses. We’ve won a few battles, but haven’t yet won the war.
And on another front, some researchers are working on modifying the ebola virus so as to render it harmless to humans. I’m not sure I’d want to sign up for THAT research project, frankly. I have a lot of respect for those who work in labs with such risky pathogens – but let’s just say I wouldn’t want to invite those folks out for a beer.
Let’s keep an eye on scientific discoveries in the field of virology. With the bird flu and other threats looming on the horizon, our lives may one day depend on it!This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
January 16th, 2008 by Dr. Val Jones in News
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We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
– The US Declaration of Independence, July 4, 1776
When I was in college I spent my summers working with mentally and physically disabled adults in group homes and camps. Many of the patients had IQs<75, which presented a unique communication challenge. Emotional outbursts were not uncommon as the adults used the only form of communication that seemed to draw attention to an immediate need. I spent a lot of my time trying to predict needs before frustrations bloomed, and after getting to know the peculiarities of each individual, I could generally keep the group in a fairly content state.
Most of the adults were on a long list of medications – some were for epilepsy, others were for heart defects, but many were antipsychotics and sedatives. At the time I didn’t realize exactly what each medicine was for, and wondered why these relatively young men and women needed so many pills.
In retrospect I believe that many of the medicines were a misguided attempt to control behavior. It’s analogous to giving someone, with their hand in a bucket of very hot water, a pain medicine instead of removing their hand from the bucket. And now new research in the Lancet suggests that antipsychotic medications (such as haldol or risperdal) do little or nothing to control aggressive behavior in the mentally disabled (though not psychotic) population.
So why have we been giving mentally disabled individuals antipsychotics for decades? Sadly, we thought that these pills would provide a quick and easy way to conform their behavior to our sensibilities, without having to get to know the reasons for their frustrations. And of course, these people weren’t intellectually sophisticated enough to question the utility of this approach or to decline the use of such medications.
I find it terribly sad that it has taken us this long to realize that giving anti-psychotics to mentally impaired people is not in their best interest. Surely more evidence would have been gathered prior to subjecting “normal” adults to such treatments. In this imperfect world, it does seem that those without a voice are less often heard. It is our responsibility as healthcare professionals to look after their interests and not take the easy way out. Mentally disabled individuals have the right to express themselves, and to be free of unproven and unnecessary drug treatments. Life, liberty, and the pursuit of happiness. Our own Declaration of Independence argues as much.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
January 9th, 2008 by Dr. Val Jones in Uncategorized
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I’m so excited and honored to have been nominated – and now selected as a finalist – for the “Best New Medblog, 2007” award! Thank you MedGadget team! If you’d like to vote for me, please go to this page. The winners will be selected based purely on quantity of votes. The polls are open until midnight, January 20th.
I’ve also collected the best posts from 2007 below so you can get an overview of what my blog is like – where else can you join a weight loss group, read weekly round ups of the best posts from medical experts, stay in touch with breaking medical news, and have a generally cathartic experience with true health stories?
The Best “Feel Good” Posts
A Baby’s Life Is Saved – a young mother forces a doctor to reconsider his diagnosis, saving her baby’s life.
Do the Right Thing– a young intern fights to save the life of a patient that everyone else has written off.
The Wounds of Childhood– how I might have made a difference for a little girl who was marginalized.
Medicine: Face-to-Face– the story of how I treated a child for the same injury I had at her age: being mauled by a dog.
Informed Consent and the Animal Guessing Game– my reflection on the emotional side of consenting for a procedure.
Thanks to Surgeons– a heartfelt tribute to the surgeon who saved my life.
Fly the Ball– the life and times of a Pakistani doctor who builds a successful career in the US.
The Best Infuriating Posts
The Last Straw: My Road to a Revolution– the true story of a child with cerebral palsy who died because he was denied a wheelchair part by Medicare.
The Benefit of the Doubt– how my friend was labeled as a drug seeker and mistreated in the ER.
VIP Syndrome: A No-Win Situation – the story of how a young man with “connections” demanded and received inappropriate and expensive medical tests, leaving the doctors holding the bag.
The Case of a Predator in the Hospital– how one drug user managed to game the system, wreaking havoc on her fellow patients.
Don’t Believe Everything You Read in a Medical Chart– the story of how a misdiagnosis resulted in a patient being wrongly labeled as a drug seeker.
The Real Dangers of Pain Medicine – a woman who died of opiate induced constipation.
The Best Sad Posts
The Scream– how a cavalier end-of-life decision destroyed a family member.
The Size of Unhappiness– a reflection on America’s obsession with thinness.
Baking Cookies– that’s all I could do as a doctor in Manhattan on 9/11.
Unencumbered by Prognosis– my dear friend handles her diagnosis of stage 4 colon cancer with optimism and grace.
Alzheimer’s Dementia: A Life Lived In Reverse– the story of my grandmother’s dementia and her slow mental decline.
The Best Humorous Posts
Conversations at the Spa– the true story of my recent trip to a high end spa in California.
Kids Say the Darndest Things– these are some pretty good ones.
The Christmas Miracle– a “miraculous” icicle forms on a Christmas tree and pandemonium ensues.
Medical Haiku– some irreverent poems I created a few years ago.
Is that Your Real Skin?– the silly conversations that arise when you’re really pale.
Dudes– a quick look at how men perceive a new hairstyle.
The “Perfect” Wedding– the story of how my hair was transformed into an alien head on my wedding day.
The Best Healthcare Policy Posts
Why I Worry about a Government Sponsored Single Payer System – previous experience with government rulings make me distrustful of population based healthcare savings initiatives.
Pay for Performance: More Red Tape without Improved Quality of Care – the title pretty much sums this post up.
Are Physician Salaries Too High? – compare them to health insurance and corporate executive salaries.
Concierge Medicine for the Masses?– my physician is part of an “off the grid” movement in healthcare.
Rationing Healthcare and the Emperor’s New Clothes – I take a look at some of the funding allocation decisions being made by the government.
End of Life Care: Healthcare’s Big Ticket Item– I explore some of the high costs of end-of-life care and the ethical dilemmas that rationing it creates.
Posts That Make You Go…Hmmm
My First Day as a Doctor– it was a baptism by fire.
The Great Unveiling– who are we deep down inside?
Night Float in the Hospice– what it feels like to care for the dying.
Dying with Dignity– I refused to practice intubation on a deceased patient as his family members waited for news in the next room.
Face Transplants: Ethical Dilemmas– should they be covered by health insurance?
The Man Who Couldn’t Speak– a strange diagnostic dilemma solved by a doting mom.
The Best High Brow Posts
Cancer: Do We Really Understand It?– a wonderful post by guest blogger Avrum Bluming, questioning if we really do know as much as we think we do about this formidable foe.
Hormone Replacement Therapy: A Critical Review– another wonderful post by Dr. Bluming.
Good Science Makes Bad Television– a series on research methodology and why the public should care about it.
The Power of Magical Thinking– describes how to recognize snake oil salesmen.
What You’ll Learn in Pre-Med Classes– a rant about how irrelevant some of the course work is that is required for admission to medical school.
What the Heck is a Rehab Doc?– the history of my medical specialty: PM&R.
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
