Washington Post’s “Salon” Disaster and Health Care Reform

As a former citizen of the Washington Post newsroom, the recent disaster about the newspaper’s “salon” project is heartbreaking and embarrassing.

I won’t belabor the issues many others have so thoroughly covered, including today’s  “apology” by publisher Katharine Weymouth, which feels a bit short of fulsome. 

Instead I want to point out something that’s gotten lost in the media frenzy: That the topic of the first “salon” [sorry, I find I have to use quotes when referring to that] was to have been health care reform.

As an independent journalist [among other things] and participant in the “health 2.0″ movement, I find this particularly distressing.

The fact that Weymouth and her team identified health care reform as the first ripe target for a scheme to bring together “the powerful few”: CEOs/lobbyists, “Congressional and Administration officials” and Washington Post health care reporting and editorial staff” demonstrates the peril faced by the group with the biggest stake in health care reform.

I refer, of course, to patients.

Significantly, Weymouth did not invite to her “salon” anybody living with a chronic disease, or someone who lost her health insurance when she lost her job, or anyone who has declared bankruptcy under the burden of paying for a loved one’s brain surgery.

Now I suppose the patient community could have raised $25,000 to sponsor the event and buy a seat at the table. [We could have all chipped in for some nice clothes and a haircut, so our rep could fit right in.]

Imagine how the conversation would have been different if that patient advocate had co-sponsored the meeting of members of Congress and Administration officials, to say nothing of the top leaders in the Washington Post newsroom!

A fatuous fantasy, I know, laughable on its face.

But it illustrates how once again that–despite what appear to be sincere efforts to introduce patient-centric healthcare reform by some members of Congress and the Administration–the very people who are the ultimate beneficiaries or victims of healthcare reform are offered no seat a the table.

Not even Katharine Weymouth’s dinner table.

Three weeks ago, a number of other “stakeholders” in healthcare reform created something called a Declaration of Health Data Rights, a statement that spells out what rights patients have to the electronic information about their care to be gathered as part of any healthcare reform plan. [Interest revealed: I signed onto it and agreed to blog on it as part of a publicity campaign.]

As I’ve argued before, things like the Declaration are necessary because patients don’t really have access to the process when the difficult, ethically complicated, legally messy and often sneaky and malicious work of making healthcare law takes place.

There are many reasons to be disgusted with the Washington Post’s salon misadventure.

The fact that it demonstrated a reflexive Washington habit of gathering an exclusive cabal of the most powerful and moneyed interests to discuss such an important issue may be the most disgusting of all.

I’ve said it before and I’ll say it again: Patients are going to have to force themselves into this debate against the resistance and indifference of the Washington establishment. Patients cannot afford the luxury of deference and e-mail.

And so I repeat the rallying cry: Patients: Aux barricades!

Health Journalists on Twitter: Not Entirely Well, Thank You

I’m going to be hosting a webinar on how health journalists use social media soon.

So I thought I’d check out the health reporters on Muckrack.com, a website that aggregates Tweets of our nation’s journalistic corps.

It can be fascinating to see what sort of brain-lint the media produce minute-by-minute on the world’s tiniest news platform.

As I began writing this entry, for instance, there were dozens of Tweets not so much reporting, but wondering aloud what was up with, the “fact” that Gov. Sarah Palin seemed to be resigning, or at least not running for re-election, or something.

It was an enlightening moment in journalistic pop anthropology. You could see the complex thoughts of inside-the-Beltway sophisticates taking shape right before your  eyes.

Tweeted Howie Kurtz of the Washington Post: “Something must be up, I guess. Kind of weird.“

Talk about your first rough draft of history.

The Health Journalist Twitterers

But anyway, I was there to check out the Health niche. The health reporting corps has not for the most part discovered Muckrack yet: Only 10 health reporters’ Tweetstreams were aggregated on the Muckrack’s Health page.

They comprised three Baltimore Sun reporters, two from the Chicago Tribune, and one from the South Florida Sun-Sentinel. [All Tribune Co. properties]. Then there is one each from CNBC, CBS News, the Montreal Gazette, and the New York Times.

And how were they using social media? The mixed bag you might expect.

Journalists on Twitter: Seeking Sources, Thinking Out Loud, Promoting Self, Getting Personal

Julie Deardorff of the Chicago Tribune, for instance, used Twitter to conduct some of source-fishing, cogitate about topics in her notebook, promote her own articles and, like all public-spirited Tweeters, reveal some personal information.

In Deardorff’s case, at least, the personal was professional.

• On Thursday June 25 she reported that she “injured my intercostal muscles by coughing for a week straight.”
• Two days later she reported she’d been diagnosed with pneumonia.
• And two days later she was back on the beat, trolling for sources to discuss the Nuval nutrition rating system.

Best-of-Class: Mike Huckman of CNBC

The most prolific health Twitterer on Muckrack–and, with over 3,000 followers, the most watched–is Mike Huckman, the pharma reporter for CNBC. Anybody interested in the bloodsport in the drug trade should follow Huckman’s sluice of reports, rulings, research and rumors about the companies that make America’s meds.

There is also insight into the life of a business journalist, such as this ripe observation about dealing with flacks. [Note the #prfail hashtag]:

mhuckman #prfail Just got call from PR person.I pick up phone,as always,”This is Mike.”They say,”Mike Huffman?”Pitching pvte co anyway,so 0 interest
a day ago by Mike Huckman, Pharmaceuticals Reporter, CNBC

Doctor!!!! Doctor!!!!!

CBS medical correspondent Dr. Jennifer Ashton Tweets about her comings and goings conducting interviews. Fairly routine stuff for journalistic Tweetle.

But for someone who is both a journalist and an M.D., she can be unusually enthusiastic. Within the stretch of 5 Tweets she managed to use 10 exclamation points. That may be a record of some sort.

New York Times and Twitter: Not a Healthy Situation

The smart set says that it’s poor form to use Twitter simply as a “push” device, as a tool to inflict yourself on the world. Everybody who participates in Twitter [it is said], even journalists, should expect to give more than they take, share tidbits with people who may appreciate them, develop relationships, etc. This is the spirit of the social web, it is said.

The biggest violator of this principle among the health reporting set on Muckrack is the estimable Tara Parker Pope, author of the New York Times’ Well health blog.

Her Tweetery consists almost entirely of two things: Links to her own blog entries and acolytic admirations of the fine work of her fellow Timesfolk. [i.e., "Interesting slide show on NyTimes Lens blog of homeless transgendered teens. http://bit.ly/14POwF"]

It’s true that Pope also gets personal; she Tweets about her preparation for the New York City Marathon.

taraparkerpope My 5.4 mi run tonight spent 630 calories according to http://www.gmap-pedometer.com . But now I’m 800 calories worth of hungry.
Tara Parker Pope, Well Columnist, New York Times

But that’s professional self-promotion too: Pope is the proprietor of RunWell, an online community for distance runners the Times launched recently.

Clearly Pope hasn’t gotten the Tweet about social media ethos. Another Twitter profile bears Pope’s name and likeness. nytimeswell is nothing but a botstream that’s triggered every time her blog updates.

Actually it’s triggered more often than that. Check out the series of simuTweets on celiac disease.

I found it peculiar that the New York Times was using Twitter is such a graceless manner compared to its peers.

The Times, after all, recently hired Jen Preston as its first Social Media Editor. Her task, presumably, would be to help staff make enlightened use of social web tools like Twitter.

So I clicked over to Preston’s feed in Muckrack to see how she is faring.

Not all that well, it turns out.

The Times’ social media doyenne hadn’t updated in about 3 weeks, and only three times since this one:

Working on response to 1,000 replies to last week’s question, how can @nytimes better use Twitter. MediaBistro conference later.
12:15 PM Jun 3rd from web

A Google Health Clinical Exam

Not one more pixel need be spilt about the issues of privacy, security, HIPAA, metastatic data, third-party crashers, or corporate imperial overreach raised by the debut of Google Health. Let’s just snap on the latex gloves and do a quick exam. This won’t hurt a bit.

Three brief clinical observations follow:

Your conditions, your choice

You can enter your “conditions” either by entering text or choosing from a disheartening alphabetic menu of bodily afflictions, from Aarskog Syndrome to Zollinger-Ellison Syndrome. The list is 20 screens by 3 columns deep when spread out on one endless page.

Immediately preceding the last entry is “Zits”–a nice bit of diction that helps reach users where they live, so to speak, to humanize the Google Machine. As with many conditions that populate the picklist (no pun), there’s a pre-loaded search for zits. But only certain conditions are pre-loaded with searches. Although “whiteheads” was on the list, when I typed it in there was no stored search. When I did the search myself up popped the zits search results.

To give the product a test run as you can see below I chose a number of conditions from the list — WHICH, IF YOU ARE AN INSURER, EMPLOYER OR ACQUAINTANCE, I ASSURE YOU ARE ENTIRELY MADE UP AND DON’T APPLY TO ME AT ALL, IN FACT I AM PERFECTLY HEALTHY. I also tried to throw Brother Google a curve ball by describing the same conditions using several different terms, i.e., arthritis, osteoarthritis and bad knees. I was permitted to add these as I wished. To see if there was any filtering or databasing of my conditions going on, I outright invented a disease by lashing together some of my favorite Greek roots: pyohemoflatalgia. (Go ahead, look ‘em up.) Brother Google didn’t blink.

Conclusion: Google isn’t databasing my conditions. I’m just entering text, and the alpha picklist is just there to prompt people to identify diseases by common names.

Google Health “Research” Offers Less–and Therefore Better–Content than a Google Search

Hit the “research” link accompanying any condition and up pops a neatly tailored page on the topic. Most of the page (on, say, osteoarthritis) consists of a spectacularly workmanlike article from the utterly competent information provider A.D.A.M. The right rail has a set of links curated by some unknown hand or machine. Depending on the topic you may get a few blurbs of news items (by some method culled from the longer, messier, far less coherent Google News results on the same topic), links to Google Groups, Google Scholar articles or related searches (”search trends”).

Observation: The regular–i.e., non-Google Health–Google searches on the same topics provide better results than Google searches on non-medical topics. (Google has for some time used a service called “Google Co-op” to serve up results from only selected health content providers.) This is good–a tacit acknowledgment by Brother Google that searches for lymphoma are more important than those for, say, “David winner Idol”. STILL, THE FIRST LISTING ON THE TOP OF GOOGLE SEARCH RESULTS FOR MANY HEALTH-RELATED “SEARCH TREND” TOPICS IS OFTEN FROM WIKIPEDIA. WOULD YOU GUYS STOP THAT?

Did somebody mention “beta”?

We all know how Google overuses the term “beta” to (correctly, often) imply an evolving product and to (necessarily, often) seek forgiveness for bugs that haven’t been scrubbed out yet.

Well: After creating “my” “personal” health “record,” I tried the Google Health (beta) find-a-doctor function. “diabetes” doctors in “Bethesda, Maryland.” Enter.

This keystroke should have triggered a klaxon audio file that screamed BETABETABETA!!! Ah-OOO-Ga! Ah-OOO-Ga!

I don’t know, maybe that top endocrinologist is staying at the Grand Hyatt Washington. Or maybe he’s taken a job with the Department of Health and Human Services? (Or is it the Department of Transportation?) Who can tell?

Anyhow, the seven minutes I have for basic clinical exams is over. It was fun giving Google Health a quick once-over. But it’s a good thing the medical record is a fake. I don’t think it’s ready for circulation yet.

In fact, there were enough suspicious observations in my quick exam that. . .I think I may have to schedule a biopsy next. Who knows what’ll turn up?

User-Generated Content: Can You Find the Pill Shill?

New comScore data suggest that about 30 percent of women consider user-generated content on the web when making decisions about birth control methods. Twenty-three percent said they wouldn’t consider UGC, and 46 percent said they’d consider it but haven’t tried the chat/forum method.

The data make sense. With a whole new wave of birth control products on the market—including drugs that permit women to have menstrual periods monthly, quarterly, or even once per year (!)—women are checking with those who have been there/done that for some straight talk.

UGC can let sisters do it for themselves—at least with a new form of a product women have been using for years, and is heavily advertised with direct to consumers suggesting it’s a lifestyle choice rather than a medical decision.

The survey, like so many, was done on behalf of pharma companies. The back story raises familiar questions about UGC with consumer products

Hmmm…pharma companies learn that a majority of women either are or would consider UGC to make decisions. So let’s see, what’s a more effective method of reaching these women–more direct-to-consumer advertising or hey, maybe a posse of online “brand ambassadors” and “superusers” who slyly create UGC on behalf of drugs?

The implication, well known to students of 2.0 marketing, is clear. In the world of UGC, it can be hard to tell the difference between a girlfriend and a pill shill.

HealthCentral PoliGraph, Cont’d.

When I committed the sin of self-promotion by writing about the HealthCentral Healthcare08 PoliGraph, in which I had a hand, I really had no idea I’d need to come back to the topic.

But the project, which plots the presidential condenders’ healthcare views on a snazzy interactive graph, has generated a bit of controversy in electroland. I’ve responded on the HealthCareBlog site (to which I have recently been invited to contribute), where most of the comments have collected.

See also a very thoughtful (if deeply critical) analysis at Ezra Klein’s excellent American Prospect blog.

Where are the candidates’ heads on healthcare?

[Warning: I have assiduously avoided using this blog to promote my own work. Until today. I promise this will be a rare, if not singular, experience.]

I just completed work on a campaign dataviz (data visualization) project for Health Central network, called the Healthcare08 PoliGraph. It plots the presidential candidates’ positions on six health care issue on both left/right and most important/least important axes.

The whole point of the project is to use interactive technology to help people extract themselves from the candidates’ rhetorical mush and actually see their differences in policy positions on issues like stem cell research and drug price controls.

I leave it to others to determine how successful the application is at accomplishing this goal (to say nothing of how accurately we’ve mapped the candidates’ positions. I suspect the campaigns will weigh in on that).

But I will let three utterly biased observations onto the page:

• The application lets you see, pretty easily, when GOPers drift into Democrat territory on certain issues (Rudy Giuliani on stem cells, John McCain on drug prices). Oddly, no Dems, except for the, how you say, difficult-to-pin-down Mike Gravel, drift into the Red Zone.
• I love the way the candidates’ heads reorganize themselves when you click from issue to issue. And the way they get bigger with mouseover. Our Flash guy deserves a case of Stoli and a case of Red Bull, ideally to be enjoyed simultaneously.
• The applications lets you map your own views on the PoliGraph with a little quiz–and then change their answers if you find out you’re close to Dennis Kucinich or Ron Paul or someone scary like that. [Don't worry: Changing your answers is only called a "flip-flop" if you're the one running for office.]

Any comments, especially constructive criticisms, warmly welcomed.

Meantime, thank you for indulging my self-promotion. We will return to our regularly scheduled harsh critique of others’ work tomorrow.

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