Medical Students (courtesy UofL)

The new crop of med students has just started. As always, they’re noisy, full of dreams, sufficiently sarcastic in conversation with one another to sound jaded, and they think this place is all about them. It’s in their swagger, the way they talk too loudly on the university shuttle, the way they ware their newly bestowed waist-length white coats, and above all, in the way they take up the whole damn sidewalk on their way to and from class.

Tourists on Segways (courtesy Segs in the City)

They are like tourists in a lot of ways. Ignoring the locals trying to go about their daily lives as they ooh and ahh in gaggles that block any forward motion, talk too loudly in public spaces about their plans for the day or what so-and-so said about such-and-such or as they count each and every stop on the metro, checking and re-checking the map after each station.

I don’t really hate the med students. I’m jealous of their exhuberance and annoyed by their thoughtlessness. I’m fascinated by the many reasons they have for subjecting themselves to at least 7 more years of almost certain debt and nearly no control over their daily routine.

The pomp and ceremony and supposed prestige are the carrots for that giant 7+ year stick, so I can’t really be upset with the attitudes that come out when they’re in a group. And now with the white coats distributed, and the stethoscopes duly hung around necks, they begin their new routine. Everyone in dress shoes for clincal rounds on Tuesdays, gross anatomy experiences bonding those who had never experienced death, and study groups meeting at the coffee shop.

Wyle as Dr. John Carter (courtesy NBC)

It’s an experience I was never interested in, but I (clearly) view it with some nostalgia. I think I wish I knew all the doctors I now work with as newly-minted white coats. I wish I could watch them develop into the physicians and researchers they are today. And see first-hand how that person’s personality was formed.

I am reading Jerome Groopman’s Second Opinion right now, and just saw an episode of Hopkins for the first time, which really doesn’t do much to de-romanticize the profession. So these thoughts are far more pronounced now than normal. Plus I can never discount the nostalgia I feel for ER, which I stopped watching in 1996 but is about to start its final season (with a return from Noah Wyle who was my first doctor stereotype after my family’s dry pediatrician).

Of course, I get my sometimes more than daily dose of Orac as well.

The Internet is supposed to change the entire world, but I’m still waiting for it to change my healthcare.

Well, that is a bit of an overstatement. My doctor and all of the physicians in her practice use electronic medical records (EMRs) to keep patient records. In fact, since the day I first saw her, I’ve never had a paper record at her office. She comes in with her mini-laptop, plugs it into the cord that’s in every patient room, and quickly runs through my most recent list of prescriptions to make sure she’s got everything up to date. Yeah, she rocks my world.

But I read a couple of interesting articles recently about the Internet revolutionizing healthcare delivery. The first described what I would imagine the future of primary care will be – going to the see the doctor online. It failed. Miserably. The WSJ Health Blog reported:

At Brewer’s office the technical end works as promised, but patients don’t really seem interested. They don’t want to pay the (usually unreimbursed) $30 for the online visit with Brewer, and they’s rather just send a regular email, even though it’s vulnerable to snooping.

Before I get into the mechanics of this, let me first say that I’m disappointed that the WSJ would cop out this much – they’re reporting on Dr. Brewer, who happens to be a columnist for the Journal. They do disclose this in the posting, but it just makes me less interested in the story. I mean, if he’s a columnist for them, let him write the story himself, don’t “report” on it.

Anyways, Brewer and his colleagues have an “expensive” website ($1800 a year) that they can no longer afford to maintain because patients aren’t using their $30 a pop online visits. I’ve got a lot of issues with claiming that “patients don’t really seem interested.” There are a lot more questions that need to be answered about this story:

• What kind of private practice can’t afford spending $1800 a year on their website? And in what world does that count as an “expensive” professional website? Granted, the group is also paying per transaction, but that shouldn’t be a problem for them right now if they don’t have many transactions!
• Is Forrest, IL the right place to test this kind of initiative? Are people very spread out so getting to the doctor’s office isn’t easy? Or is it a very urban environment like DC where people don’t have time to get to the doctor?
• What kind of promotion did the practice do for this site? Were their patients aware that it existed?
• Is the patient population in for Forrest Family Practice a tech savvy group? Are they comfortable using the internet to communicated with their doctor?

Brewer created a forum on the WSJ site to ask about people’s opinion about email with their doctors. Generally, the response was pretty positive – the big exception being doctors worried about liability.

So is it too crazy to think about virtual doctor’s visits? Apparently not in the UK.

Cancer Research UK, a cancer charity somewhat similar to the American Cancer Society (ACS) in the US, has launched Cancer Chat, “a forum with a difference.” It’s an online forum like many others dedicated to talking about your experience with cancer. The difference is that this forum is moderated. They’re calling it “an information safety net.” I call it moderated because they’ve got a team of staff members making sure patients are not subjected to false information or quack cures. This isn’t a bad thing, let’s just call it what it is.

The really interesting thing is that the website doesn’t trumpet this fact. Patients and caregivers use the internet to share experiences with one another. They also search for information about diagnoses, treatments, and more. For both of these, users seek assurances that information is accurate. So I would think that the moderation would be a big selling point. Strange that they don’t take more advantage of it.

Anyways, it will be interesting to see how Cancer Chat works in the long term. Looking at the discussions thus far, it doesn’t look like it’s been so successful yet. After a week, the symptoms, testing and diagnosis section has 4 topics with a grand total of 23 posts.

A discussion at work today made me realize that there is a very important long tail in medicine. While Chris Anderson may have explored this already in his blog or in a chapter of the book I haven’t read yet, the long tail of medicine is the large number of diseases that we have yet to understand or cure.

There are traditional “orphan” diseases which affect fewer than 200,000 people in the United States each year. Because of their low prevalence, little direct investment has been made by NIH or industry in research to understand them or to develop new treatments for them. One example is Ewing’s sarcoma, which affects only 200 kids and young adults in the US every year.

These orphan diseases certainly fit into the long tail of medical progress, and I hope that the recent proliferation of biotech firms will find a way capitalize on the long tail. Of course the difficulty here is that there is no enabling technology like the internet to make research into diseases in the long-tail of medicine possible. We’re missing that single gateway through which new treatments can be developed for multiple diseases. If book-lovers have Amazon and music-lovers have iTunes, Rhapsody, and others, what is the equivalent in the field of biomedical research?

The human genome revolution was supposed to open the doors to something like the long tail. Academic institutions around the country are trying to figure this out. The Broad Institute in Boston was created for just this purpose – turning the genomic data into medicine.

I don’t think there is anyone would would dispute that we have made major advances. But I’m not sure the results have lived up to the hype in the late 90s. The question is not why this didn’t enable the long tail the way the internet did, but rather, what kind of technological innovation do we need to make this possible?

Biomedical research is a lot more expensive than storing digital audio files. And when we purchase a brand name drug, we’re paying for the millions – if not billions – of dollars that went into developing that drug and the 30 (or 50, or 100) drugs that they invested in but failed during development. Thus far, the model for pharmaceutical companies has been to go after the blockbusters at the head of the tail. And this has certainly become more true as the industry has felt the pressure of expiring patents, and the pipeline of drug candidates dries up.

So what is the technological innovation that will make the long tail make sense for medicine? How can biomedical research and the pharmaceutical industry take advantage of these new economics?

I apologize, but I don’t have the answers for you tonight. I wanted to start the conversation and see if we, in the long tail of the internet, can come up with some ideas.

Update: Chris Anderson does have a post about the long tail in medicine. He deals more with the market for drugs in the long tail, so thoughts on how to make this profitable are still welcome!