Tonight (Jan 31, 2008) the CBS evening news will be airing a segment about a tragic case of a young Marine who died of melanoma. According to the news transcript, an unusual mole was diagnosed as a melanoma in 1997, but no follow up was scheduled, and no explanation given to the young man about his diagnosis or treatment plan. Eight years later in Iraq he complained to medical personnel of the mole growing larger and he was told it was a wart which would be treated once he returned to US soil. He slipped through the cracks somehow, and tragically died in 2008 of stage IV melanoma.

One interesting issue raised in the segment is that the Marine was not eligible to to sue for negligence in his case.  There is a law, the Feres Doctrine, that denies military personnel the right to sue the government in cases of perceived or real medical malpractice. The rule was established in 1950 after a case was brought to the U.S. Supreme Court (Feres v. United States) in which servicemen who picked up highly radioactive weapons fragments from a crashed airplane were not permitted to recover damages from the government.

While I do understand (in theory) the purpose of this law - if every battle injury allowed soldiers to sue the government, we’d bankrupt our country in the span of a year - it does seem to be over-reaching in this case. The Marine was not injured in battle, but his life was indeed compromised by sloppy medical follow up. In my opinion, the doctor who correctly diagnosed him in 1997 should be held accountable for lack of follow up (if that’s indeed what happened). As for the military personnel who thought the Marine’s advanced melanoma was a wart, that is a tragic misdiagnosis, but hard to say that there was malpractice at play. With limited access to diagnostic pathology services, it is difficult (in the field) to be sure of the diagnosis of a skin lesion. And yes, I can imagine that an advanced melanoma could look wart-like. This is a tragic shame, but since the young man had the melanoma for 8 years prior to the misdiagnosis of the “wart,” in the end I doubt that a correct diagnosis at that point would have changed his terminal outcome.

But I wonder if the Feres Doctrine should be modified to allow for more accountability amongst military physicians in caring for diseases and conditions unrelated to military service? Although I am not pro-lawsuit, it does seem unfair that this Marine was denied the opportunity to pursue justice in his case. What do you think? Check out the segment with Katie Couric tonight and let’s discuss.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.

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.

I’ve been wrestling for some time about whether or not it’s appropriate to blog about celebrity news (particularly health issues). On the one hand it seems like an invasion of privacy - what gives me the right to speculate on their health? Shouldn’t I leave the poor celebs their privacy, hen pecked as they are by the media? Yet, on the other hand, when the country is abuzz about an important health issue, there is a “teachable moment” in which doctors can perhaps influence patient lifestyle choices for the better, or encourage some preventive screening if needed.

I did decide to blog about Heath Ledger’s sad passing, and thought it might be important for people to know about autopsies and how they work. Although I had mixed feelings about the post, it was one of my most popular in a long time. So that led me to conclude that I shouldn’t shy away from celebrity news. Nonetheless, I confessed my squeamishness to a friend of mine, and his answer was so insightful that I thought I’d share it with you:

The other way I think
of it is this:  health is really personal.  Almost everyone who writes about
health does it from the perspective of a personal story – the most common health
blogs are health blogs by patients / survivors about their own experience, the
next most common is by doctors talking about patients.  You could have written
yesterday’s entry [Heath Ledger] about the death of a friend or a patient under unknown
circumstances.  The problem is that a blog that begins every time with, “I had a
friend who had ALS…” is very concrete to you – you know the friend – but not
concrete to the reader – they don’t know your friend.  The use of celebrities
creates a shared vocabulary – people we all “know” that we can converse about.

Put another way, in an
era before blogs, where health conversations were held around kitchen tables and
over the back fence, there was probably less discussion of celebrity health
because the discussants all shared a common stock of people about whom to chat:
Doris down the street has breast cancer; Trudy two doors down has a pregnant
teen; Francine on Maple Street has a mom with Alzheimer’s.  The internet and
blogs are an attempt to create a similar conversation with people all over the
country – the planet – who don’t know any people in common.  Celebrities are the
only folks we can all discuss, because they are the only folks we all
know.

What do you think? Is it ok to blog about celebrities? Should I do more of it? Less of it? Does my friend have a point? Please share your thoughts.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.

I spent the weekend with 6 nieces and nephews, ranging in
age from 6 weeks to 13 years. One four-year-old niece was particularly
interested in engaging me. I tried to warn her that I was terribly boring and
that I wasn’t good at playing with dolls. But she remained unfazed by my
late-night protestations.

“Auntie Val would you like some ice?” She said, presenting
one melting ice cube to me in her warm hand.

“Hmm… no, not really, thanks.” I mustered a smile hoping
that she wouldn’t feel rejected.

The little girl went on, “Well, my bed is full of soft
blankets so you should put on your jammies and we can go to sleep there. It
will be a lot of fun.”

“Ah… well, that’s very kind of you to offer, but I think I
need my teddy bear to fall asleep. Uncle Steve is my teddy bear.” I pointed at
my husband sitting next to me on the couch.

The little girl replied matter-of-factly, “No he’s not. He’s
your cake.”

“Um… well, that’s an interesting way to look at it.” I
replied awkwardly.

“You know, if you kiss uncle Steve then you’ll be married.”
She went on.

Steve immediately kissed me on the cheek and smiled
triumphantly.

“No, you have to kiss her on the lips, uncle Steve.” The
little girl put her hands on her hips.

“Uh… well… Honey, would you like to marry me again?” I asked
sheepishly.

“Why yes I would…” and Steve gave me a peck on the lips.

Then the girl squealed with glee and ran around the coffee
table one and a half times.

Does this buy me a second honeymoon?This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.

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.