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The Legacy of the Tarceva Diva

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About three years ago, a new member of our Lung Cancer Survivors Support Community posted a message: she was taking Tarceva and wanted to discuss with fellow members everything about that cancer drug.

She titled her post, TARCEVA DIVAS AND DUDES DISCUSSION & SUPPORT. She saw a need to create a community within a community, and beginning with that modest post, she did it. She didn’t ask permission. She didn’t wait for us, or another member, to organize and lead a top-down discussion about Tarceva.

The ongoing discussion string became the place for our members to go to talk about Tarceva and next-generation lung cancer treatments.

The member became known by some as the Tarceva Diva, and for the purposes of this story, that’s what I’ll call her. This story is not specifically about Tarceva, or even about lung cancer, but instead, it’s a celebration of  an unsung hero who helped thousands of people.

There have been well over 8,000 posts in less than three years’ time–about 250 posts per month–in just that series of hundreds of “Divas and Dudes” discussion strings. That’s a constant, dedicated stream of treatment insights from-the-front-lines of people worldwide affected directly by lung cancer.

“WELCOME TO TARCEVALAND!!!” she’d proclaim to a new member, or “newbie.” She could insert humor into the discussions without making light of the seriousness of members’ illnesses. The activity in the Tarceva sub-community grew so quickly that the Tarceva Diva created another discussion topic, TARCEVA SIDE EFFECT BUSTERS, which created yet another resource for members.

Happy Fifth Birthday, THCB

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Five years ago today, without really knowing what I was getting myself into, I wrote the first post on The Health Care Blog.

Birthday_2If you forced me to come up with a reason why, I would have told you that I thought that a blog would give me a chance to build my nascent consulting business — although I think the process was actually more useful to re-educate me about health care. I’ve never calculated the time spent on THCB, but I’m pretty sure it hasn’t been a rational financial decision.

The first post was about what was wrong with Medicare (and it’s still equally valid today and probably will be equally valid in 2013!) For the first little while I tried hard to maintain an analytical air about the future, while trying to avoid giving overt opinions. It took me a month before I started editorializing, even though the first one was introduced in a mealy mouthed way—as I somehow didn’t trust people to distinguish between what I thought ought to happen and what I thought was going to happen. But that didn’t last too long, thank heavens.

For the first year or so I was probably writing for myself and about 3 other people. Back then Russ at the late lamented Bloviator was writing about public health, Don Johnson also was writing about health care at The Business Word (Don left blogging but made a comeback and has been an occasional contributor at THCB). Back then my two favorite medical bloggers were MedPundit (who left blogging then came back then eventually left again), and DB’s MedRants who’s still going strong. And of course, although it took me years to find, Mr HIStalk had already staked out the hospital IT market. But in all honesty it took a long while before anyone took us seriously.

Now, the WSJ and New York Times have health-related blogs, and over 800 are listed on the Healthcare 100, even if THCB has fallen a few spots since their recent recalculation! While I’d argue that many of the 800 are not much about health care, but about science and fitness, and that the ranking is pretty arbitrary, there’s no question that—as in technology and politics—health care has been changed by blogging.

In fact THCB has been involved in some of the big debates about the future of health policy, and I’ve had the chance to meet some policy movers and shakers I’d never have met in my old consulting life. Heck, Paul Krugman even devoted a page to THCB in his latest book! (I, of course, only found out when a friend sent me a copy with a note about it!). Nonetheless, I’ve had fun meeting liberal journalists like Jonathan Cohn, libertarian think tank guys like Michael Cannon, and have interviewed a cross section of the intense (Shannon Brownlee), the too-nice for their views (David Gratzer) and the right-wingers barely hanging onto to reality (Grace-Marie Turner). Not to mention lots of fun with early day podcasts with libertarian surgeon Eric Novack, who still makes the odd appearance here.

THCB has also given me and many others the opportunity to see some real changes in health care. The biggest for me personally has been the front row seat I’ve had in the development of Web 2.0 in health care (yes, yes, it’s called Health 2.0). What started as few small conversations 3 years ago has blossomed into a movement, and also for me and my partner Indu Subaiya, a day job! But there are lots of developments that have been covered on THCB and debated by its community, including quality, patient safety, EMRs, HSAs, individual insurance, cost-effectiveness, pharmaceutical marketing, PBMs, technology, and many many more.

And THCB really has changed into a community. Over the years, there have been many regular contributors, including those like Matt Quinn and Brian Klepper who’ve taken over the blog while I’ve been away, and contributed immensely at other times, too. And more recently, THCB has been a venue where other bloggers show some of their best stuff — I want to thank those like Jane Sarasohn-Kahn, Maggie Mahar, Bob Wachter, Paul Levy, Scott Shreeve and several others who let us feature their writing. It’s now very much a group blog — although it was only this year that I started to give my own pieces a byline rather than just assuming that everyone knew it was me! Now I’m happy to be just one of the crowd.

Moreover, THCB has always enjoyed lots of comments. Some are from people passing by just once or twice, but others like Tom Leith, JD (no, not JD Klienke), MG, Peter, tcoyote, Barry Carol and many more have come back time and again to comment and add really valuable insight. Some commentors are gone and much lamented (Theora Jones), some are gone and less so (Stuart Browning) — meanwhile, anyone want Ron Grenier back? Ron remains the only commentator banned from THCB (for outright rudeness), which I think underscores how great the tone of the discussion has been, despite the clear differences of opinion amongst the commentators.

So I want to leave you with two last thoughts.

First, what’s next? Well over the course of the next few months THCB will be continuing to evolve its look — there’ll be more content, more authors, more great debate, and more ways of finding that content. We’re going to be making some changes to the front page and some definitional changes to both make the sections clearer and make some of the best “perennials” easily visible. THCB now has its first professional editor/author, Sarah Arnquist, whom I hope will be using THCB as a stepping stone to her future Pulitzer Prize. She’s a journalist working at THCB while pursuing an MPH at Johns Hopkins. We’ll also be making it a little easier for advertisers to sponsor appropriate sections of THCB. Yup, while THCB has never directly made me a penny, it is finally showing the potential to be a real media site, which brings its own opportunities — and pitfalls.

Second, THCB’s great run wouldn’t have been possible without lots of help. I can’t possibly name everyone but I do want to shout out for a couple. My first assistant on the project was Ginny Pham-Kanter who helped get the blog a little more organized. But after Ginny had to retreat to graduate school, John Pluenneke took over. John’s been running the business and technical side of THCB since 2005 and this blog’s progress is more due to him than anyone else. Thanks, John!

These thank yous wouldn’t be complete without a thanks to everyone who’s ever written for THCB, or posted a comment. A blog is a microphone, but it’s only fun when that microphone is shared around. And finally, of course, thanks to you the readers.

The first few months there were only a few readers every week. When last month THCB had over 50,000 visits, those early days seem very distant. I’m really looking forward to the next five years!

But in the end, it’s all about one person sitting down and writing his or her thoughts and opinions — and hoping that somebody, who they probably have never met and probably never will, comes by to read them. On a personal note, thanks for reading mine. — Matthew Holt

 

 

Decision Fatigue. For Doctors, Too?

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This article by John Tierney in the New York Times suggests that humans suffer from decision fatigue, the tendency to make worse decisions as you make a series of hard decisions as the day goes along.  Here are some pertinent excerpts:

No matter how rational and high-minded you try to be, you can’t make decision after decision without paying a biological price. It’s different from ordinary physical fatigue — you’re not consciously aware of being tired — but you’re low on mental energy. The more choices you make throughout the day, the harder each one becomes for your brain, and eventually it looks for shortcuts, usually in either of two very different ways. One shortcut is to become reckless: to act impulsively instead of expending the energy to first think through the consequences. The other shortcut is the ultimate energy saver: do nothing. Instead of agonizing over decisions, avoid any choice. Ducking a decision often creates bigger problems in the long run, but for the moment, it eases the mental strain. You start to resist any change, any potentially risky move. Once you’re mentally depleted, you become reluctant to make trade-offs, which involve a particularly advanced and taxing form of decision making.

BLOGS: Health Wonk Review is up

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I knew I should have hired an unpaid summer intern. At IBM they have them by the dozen and one of them, Emily Goodson, has done a nice round up of health care blogging in Health Wonk Review over at HealthNex.

Any unpaid interns looking to boost their resumes know where to apply…

HEALTH PLANS: Does this sound in the least familiar?

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From Government News of the Week:.

Connecticut Attorney General Richard Blumenthal (D) said his office has received complaints that Assurant, Inc. denied claims based on questionable conclusions about patients’ pre-existing conditions. The AG’s office said it received 20 complaints against the insurer over the past few years, and that 15 of those claims involved denials for health conditions that allegedly existed before the policies were effective. The claims that were denied came from individual policyholders, Blumenthal’s office said. Also, the Connecticut Insurance Department said it received 111 complaints over the past four years related to Assurant’s denial policies and that only 16 of them were deemed justified by the department. The insurance department started investigating the insurer’s claims-denial practices last year. Assurant Health spokesperson Phillip Chang said the plan is committed to working within all applicable legal and regulatory guidelines of every state it does business in, but could not comment on individual cases.

Of course, it’s unlikely that this type of thing was going on only in California. Meanwhile, long-time THCB readers might be amused to know that Assurant was the company whose HSAs and HDHPs were being pimped continuously on this channel by commenter Ron Grenier. In other words they were among the most underwritten of all policies—and apparently they still had to cancel them after the fact!

Interview with Trizetto & Eliza

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Due to poor planning on my part, this morning I was up scandalously early to talk with Gene Drabinksi, who runs the CareAdvance unit of Trizetto, and Alexandra Drane, President of Eliza.

Last week they announced a partnership that integrates the care management aspects of Trizetto’s services with the automated phone outreach provided by Eliza. It’s another step in the evolution of phone-based contact and personalization in health care — which, the careful THCB reader will have noted, I think is an important channel for delivering and capturing health information.

Of particular importance, is making useful that vast glob of data stored within a health plan by communicating about it with the members. It’s also always good to hear from some experienced and passionate players, and Alex and Gene certainly fit that bill. As I hadn’t had any coffee, I wouldn’t claim the same for myself!

Here’s the interview.

POLICY: Doing my bit to piss off the unthinking right

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Cool. I make an off hand remark about conservative think tanks and get them all riled up. Amy Ridenour, who has an interesting place in the panoply of right wing think tanks and influence peddling, prints an email I wrote her and tries to answer my questions. I’m sure Mr Scaife thinks his money is well spent.

Of course what my piece was doing was directly stealing the conservative right’s tactics of changing the debate. Except in my case I’m doing it logically.

For instance, the right called inheritance taxes “death taxes” suggesting that they fall on everyone who dies—even when only a tiny minority pay them. So the law is changed and a mythical family farm is saved, and so funnily enough is the family fortune of the Waltons and their billionaire friends.

Similarly the right has been attacking foreign countries for alleged sub-standard care, and using that to justify our appalling health care financing system. All I’m doing is asking them to defend the care here that’s found to be of a worse standard. And of course Amy can’t. Perhaps her man Hoggy can. I’m looking forward to his response!

TECH: Microsoft spreads Vista FUD

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Get your conspiracy theories going. One day after the VA and CMS release VistA for small physician offices, Microsoft tells the world that its "new" OS Longhorn (or Windows 2003 or whatever it was originally) will, in a stunning piece of Redmond originality, be called Vista.

Well they could have called it LyNux. Has anyone noticed that VistA is open source and free?

BLOGS: Health Wonk Review contributions needed

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Get yer contributions to Health Wonk Review in as soon as you can over at Fard’s blog Envisioning 2.0

POLICY: What will turn the tide? by Atlas

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Correspondent Atlas (who you may recall is the token right-winger on THCB)   writes regarding my question as to what will turn the tide regarding reform:

The pondering of what might start a proletarian revolution in health care sounds jarringly reminiscent of Lenin’s observation about Czarist Russia: "The worse, the better."

The reality is that most Americans are reasonably fat and happy with their healthcare, which is why the starry eyed Reds of the health care firmament (Dr. Angell et. al.) are always disappointed when the rage at the machine so fashionable among the chattering class don’t resonate with Red-land.

The real power behind the move to give big pharma and the rest of the healthcare sector, as you allude to in your post, is mean old big business–GM and the rest of the Fortune 500. One industrial titan’s revenue is another’s expense, and since big biz picks up nearly half the tab, they are leading the charge behind the scenes to cut that cost through the usual means–get government to pay for it, or outsource it to India.

Government is the other pincer putting the squeeze on the healthcare-industrial squeeze. Those of you who lament Bush II pay close attention and watch how the Administration uses clever cost cutting wolves in private sector sheep’s clothing to penetrate deep behind healthcare-industrial complex lines.

I’ll have you know there are some otherwise reasonably rational Republicans running around Congress waving bloody reimportation shirts. There are cheap votes to be had in this farce, and most of the Chamber will still respect you in the morning.

Most big business would like nothing more than to unload their healthcare costs on the government, which will then either tax and spend until the whole deck of cards collapses, or (much more likely) ration us into a Kafkaesque gulag system ala Great Britain or those envied denizens of the great white north who migrate south like birds in Fall should they actually need healthcare rather than the illusion of it gratis.

Sad but true, there is no free lunch. Would that there were. But no one works for nothing. Not even noble minded authors. And they are far less likely to be sued into oblivion for human faults than big pharma, hospitals, and the beleaguered medical profession, its ranks already projected to fall 20% short of projected demand by 2015.

Even now, why would any intelligent young person choose medicine over law? A good trial lawyer can make more in a year than a good doctor can make in a lifetime? So those who clamor for socialized health will have to rely on scholarly saints in a capitalist world, which will make the queues for healthcare even longer.

Nonetheless, there are legitimate problems that need to be solved and can be addressed without killing the geese that lay the golden eggs. Some of Kerry’s ideas and some of Hillary’s had merit. If we fully funded Medicaid and raised the eligibility limits, possibly by means testing Medicare and Social Security, I think a lot of the legitimately uninsured would be covered. But instead politicians waste time and political capital on stalking horses like reimportation. Let those who are serious–big business, big pharma, big government, organized medicine and hospitals and all the other players, purveyors, and payers–sit down at the table and make great compromises for the good of the people, instead of demagoguing  for political gain. Only serious candidates need apply.