The Growing Power of Social Media In Scientific Scrutiny and Public Policy: Two Examples

Tomorrow's docs checking out
the medical literature

Regular readers of the Disease Management Care Blog are well aware of its enthusiasm for the emerging role of the internet and social media in advancing scientific knowledge and promoting public policy. 

Here are two great examples:

In this blog post, public health professor Michael Siegel takes the company Alere to task for allegedly making inflated claims on its web site about the success of its tobacco cessation program.  The sleuthful Dr. Siegel did a literature search to find out more about the science underlying its claim, and found that persons lost to follow-up were assumed to have quit.  The original Alere publication refers to a curious "responder analysis," but also documents a far more modest "intention to treat analysis" with a one-month quit rate of 21%.  That lower number - and the fact that quit rates are typically reported over 6 months, not one month - was excluded from Alere's marketing.

The Disease Management Care Blog has previously pointed out the hazards from Boards of Directors letting their company's management put dubious or vulnerable research into the public domain. Dr. Siegel is a perfect case in point of the power of an interested and skeptical scientist who can use the internet's public square to attack research "spin" and batter a company's reputation. This kind of reputational threat needs to be "top of mind" when population health and care management company Boards are thinking about their enterprise risk management challenges.

And as further testimony to the growing potency of bloggery, check out this posting on The Health Care Blog on "seven policy recommendations" that were jointly co-authored by heavyweights from the Urban Institute, Johns Hopkins and Yale.  Not only are the recommendations themselves worth consideration, they were "open-sourced" on a blog - not a journal - with a level of speed, timeliness and visibility that traditional print media can simply no longer match.

Blogs vs. Traditional Journals in Health Care Policy Making: McAllen Texas as an Example (and the possibility that it's not an outlier)

Atul Gawande’s New Yorker McAllen Texas article is the policy zombie that refuses to die. The big news is that while this still-walking undead has generated some vigorous debate, it's prompted a fascinating insight about the growing role of non-traditional media in driving health reform.

First off, there’s a lengthy Health Affairs academic, contrasting policy and business-oriented roundabout on McAllen from the learned Elliott Fisher, Gail Wilensky, Robert Berenson and Robert Galvin. Don’t want to read all 16 pages? Neither did the Disease Management Care Blog, who was reminded of an exchange by its spawn years back. The daughter was talking about something extremely remarkable to the utter boredom of her brother. Seeing her enthusiasm wasn’t being shared by the lout, she stopped and asked him what was wrong. He laconically replied the topic was interesting enough, but she was ‘using too many words.’

Thanks to some Argentinean Torrentes and grilled salmon, the wordiness became tolerable and can be summarized for your quoting pleasure as follows:

Fisher: Being from the outfit that brought out the Dartmouth Atlas, he finds Gawande’s lay person style to be an accurate portrayal of the science of variation. Given the public’s interest in health reform, the article's timing was perfect. Dr. Fisher is against slashing prices in an effort to cap McAllen’s expenses and prefers the use of positive incentives, bundled payments and better integration of primary care and specialist physicians.

Wilensky: This former Medicare and Medicaid administrator is concerned that the article may have been too simplistic and missed some other explanations, other than dysfunctional incentives, for McAllen’s outlier status. That being said, she thinks the phenomenon is real and physicians need to be better aware of it. It’d be nice to fashion some turbocharged demos to attack variation, but in the meantime, she doubts physicians are ready to walk away from old fashioned fee-for-service (FFS).

Berenson: He spotted McAllen back in 2003 but no one paid attention. Medicare might want to investigate for fraud and abuse and, if none is present, he’ll chalk it up to the community’s practice style. Speaking of which, Boston, Chicago and Atlanta have much to be desired in their practice styles also. He likes accountable care organizations (ACOs) because they don’t have to take on insurance risk and accurate risk adjusted payments are within reach. If it’s done right, physicians might even be willing to give up on FFS. He also warns that bundled payments don’t necessarily mean that a population will have better outcomes or that hospitals won’t come to dominate the health care scene.

Galvin: This General Electric medical director was also struck by how unaware the McAllen physicians were about their outlier status. He isn’t sure that (ACOs) are a proven answer to the problem of variation and, what’s more, they could become local monopolies. He prefers comparative effectiveness research linked to yet-to-be-developed payment models.

As pointed out in another post, the DMCB agrees there is variation but points out that outliers are a) randomly inevitable in any large market and b) don’t necessarily hold any lessons that can’t be learned by studying the average. The trick is to tell the difference between randomness and causality, which was conspicuously absent in Gawande's article.

But hold on. Maybe McAllen isn’t even an outlier if Medicare enrollment, socioeconomic status and disease burden are properly accounted for. Check out this very important analysis that was posted by health services researcher Daniel Gilden on the Health Care Blog. He concludes that McAllen’s utilization patterns are high, but if careful and standard statistical methods are used to neutralize the cost drivers outside of the physicians’ control, McAllen is decidedly close to the average. In contrast to the Health Affairs posting, every word on this very important article has huge implications for the argument that physicians have run amok with unwarranted practice styles.

So here’s the real lesson: Classic journals like Health Affairs and the New England Journal and their go-to authors still have a role to play in policy discussions but alternative media, like the blogs, are becoming remarkably nimble in ‘posting’ insights that seem to be out of reach of these traditional information venues. While policy giants went on and on and on in the staid Health Affairs, Mr. Gilden chose the non-traditional but widely read THCB to post an important and provocative analysis that will undoubtedly garner significant attention. It's deja vu all over again for the DMCB and its spawn.

That’s why the DMCB hasn’t submitted many manuscripts lately to any journals. Sure, keeping a blog is fun and just as remunerative as assigning eternal copyright to the publisher for free, but the emerging potential of the web as the most important source of health policy information is truly remarkable.

Bridging the Divide Between Policy Blogging and... what are they called... Oh Yes, Patients.

Why Blog?

The Disease Management Care Blog’s spouse has asked that several times. In a prior post, it described a recent Kaiser Family Foundation webcast confab on the increasing role of blogs in the formulation of health policy and the DMCB learned its motivations are not unique. First off, it’s an enjoyable way of building a circle of like-minded colleagues. Second, if you’re going to read about developments in your field of interest, writing about them sharpens focus and makes for more disciplined reading – and learning. For physician readers, think of it as a virtual and solo version of ‘Journal Club.’ Alas, for bloggers with spouses, think of it as ‘not impressed.’

The DMCB thinks of itself as a ‘policy’ blog and a small one at that. Heck, while it may think ‘disease management’ is a big topic, it’s a pipsqueak compared to Health 2.0, health insurance or pharma. Unlike the political or celebrity blogs, it doesn’t ‘break’ news, but aggregates and interprets it. Unlike many of the health policy blogs, it tries make liberal use of links to the peer reviewed evidence-based literature. It reluctantly confesses to paying attention to other health policy blogs but avoids the temptation of writing to capture their attention or to engage them in a web traffic-increasing game of point-counterpoint. It would much rather get email or comments, which are really appreciated (hint).

The DMCB reluctantly accepts Google ad revenue because it thinks any conflict of interest is small and that the Google search engines favor blog sites that accept its ads; to date the revenue for that single rotating ad on the right has resulted in $5.19. The DMCB does not participate in product promotion or marketing. For other blogs, ads and promos are big business.

The DMCB shares in the policy blogs’ greatest weakness: a broad disconnect from the persons we claim to know so much about: the patients. And, by the way, patients are also creating diary-blogs that frequently spill into telling observations about the health care system in ways that may be missed by us policy know-it-alls.

Case in point: check out how a parent at the X-Dad site has to process an evolving and complicated insurance and pharmacy benefit for a son with a rare genetic disorder (‘the good, the bad and the drooly’). The premium is high but still comparatively worth it, the new health savings account (HSA) may or may not cover medically necessary services and drugs can go from covered n’ cheap bulk mail-ordered to not so covered n’ pricy-monthly.

We on this side of the blogsphere, including readers, need to remember that health policy, medical technology and benefit changes that supposedly take advantage of the supposedly most modern advances in cost and quality result in real life challenges for real people. Thanks to X-Dad, the DMCB is reminded that the patients’ (and parents’) points of view are the ones that are ultimately the most important.

A Blog about the Kaiser Family Foundation's Conference on Health Policy Blogging

The Kaiser Family Foundation sponsored a 1 ½ hr conference on the influence of health blogs on policy debates and journalism. While you can access the webcast here, the Disease Management Care Blog is pleased to post this blog about bloggers who talked about their blogging.

HHS Secretary Leavitt confesses to being an inveterate blogger. He got hooked because he’s been a long term fan of the web and recalled that as a former Governor, he found placing State services online turned out to be user-friendly, efficient and welcomed by his constituents, He also likes to write and uses writing to help clarify his thinking about issues and policy. He started blogging as a 6 week experiment and he’s still going strong. He can feel secure in blogging because as Secretary he is the official spokesperson for HHS. His twice-a-week posts consume about two hours a week while in trains, planes, automobiles and hotel rooms. There is no vetting’ by HHS staff, but he has a writer to help with grammar and punctuation. He is careful to solicit feedback prior to posting anything and has gotten advice to think again which sometimes leads him to withhold an article. Responses on the blog are moderated and other than three exceptions, all have been posted. Most are informed, many are insightful and some have even helped him change his thinking. His blog helps the staff at HHS who can use it as a library of ideas. He also believes his blog-based communications are more likely to be read than traditional print channels. Mr. Leavitt mentioned one person in HHS already has an official avatar in SecondLife. He has little doubt blogs will be a significant force in the formulation of public policy in the future.

At the conclusion of the Secretary’s remarks, there was a Panel Discussion moderated by Kaiser’s Vicky Rideout.

Michael Canon of the Cato Institute noted that he and his organization blog because their mission is to carry a torch for their libertarian ideas. They hope they educate interested readers about the finer points how they think government should operate. The ‘turnaround’ is also far quicker; when an issue comes up, there is no ginning up press releases or op eds. Yes, it’s easier in blogs to be vicious and half-cocked. Yet,talk radio or investigative reporters can be just as distasteful - so blogs are prone to being just as guilty but not more so. Blogging can change minds but he thinks that happens among the bloggers, thanks to ‘cross pollination.’ No mention of whether anyone is more libertarian if they subscribe. He also agreed that health policy blogs, despite the reputation for democratizing the public square, interact very little with other types of health blogs, for example, with persons with who write about their struggles with diabetes or docs that write about their experiences.

Ezra Klein of the American Prospect blogs because his organization knows media is changing. As mainstream media become increasingly shallow thanks to collapsing news cycles and attention spans, his blog offers considerable liberal depth for the interested news consumer. After all, in blogs, there is no scarcity of space, only content. Accordingly, Ezra can not only write insightful long articles but set them up as ongoing conversations that create relationships between the writer and the readers. He estimates his site gets about 50,000 unique hits a week and believes his readership consists of persons between 30-40 years of age, probably office workers who complete their morning tasks and use the late morning or lunch hour to read his posts. He also finds his posts are the gifts that keep on giving, because they often continue to get quoted long after they are posted or the news cycle has runs its course. He thinks his readership ‘tilts’ male and white which may be someone ironic for the supposedly diverse blogsphere. Yet, he also notes that it is too easy for persons from diverse backgrounds to become sorted into bloggycubbyholes based on race and gender. To him, the blog coin of the realm is feedback. He also notes that people cannot resist Googling their own names and that writing about or quoting people in blogs invariably draws them to your site – which not only increases traffic but enhances your visibility among opinion leaders. Blogs also get considerable media attention and, depending on the topic or circumstances, can generate embarrassing partisan feeding frenzies. Ultimately, once key difference from traditional media is that blogs speak not from ‘authority’ but ‘sourcing.’ He’s also not worried about any negative impact from blogging on public discourse because it can’t get any worse.

Jacob Goldstein of WSJ blogs because it fits with the Journal’s newsprint mission: explain the world clearly and insightfully. Someone else could do it, but this blog would prefer to be the one doing it. Blogs serve to aggregate content for both readers of the Journal as well as nonsubscribers. The Wall Street Journal doesn’t disclose traffic statistics, but it’s enough to meet the Journal’s ’desires.’ Its preferred style is to write as ‘an insider’ and he thinks that’s more effective than the what-where-when-why and how of traditional reporting.

John McDonough of Healthcare For All (in Massachusetts) blogs to overcome the superficial treatment of healthcare by the media and to communicate an important point of view about access to insurance. He described his site as a ‘diary’ of health care reform in Massachusetts that aggregates or ‘stitches things’ or links things together, such as documents and op-eds. He also hopes he has created a ‘community’ of about 1000 like-minded readers a day. Conversations on his site can turn into ‘pie throwing,’ but even that’s an opportunity to correct misimpressions. He notes blogging may not change minds but he derives some satisfaction by drawing attention to topics that are relevant. As a blogger, he finds anonymous posts are annoying but that’s not necessarily different from talk radio where persons can also talk anonymously. He believes blogging has helped changed some Massachusetts’ insurers’ minds. Finally, he thinks blogs accelerate the political process because legislators are reading about themselves.

Tom Rosenstiel is a media expert who described blogs as ‘muffins,’ distinguished more by their shape than content. He notes bloggers typically think of themselves as activists, much like soldiers in an army. Blogs have big implications for mainstream journalism, which is slowly moving online anyway. He’s not sure what media will look like in 25 years and he’s not confident that print will continue to exist at all. For example, many newspapers nowadays have ½ of their readership on line. There are 30 million unique visitors a month for these newspaper sites and the numbers are growing. He suggests blog readers are heavy news consumers who use blogs to extend the news they consume. In surveys, 50% of blog readers say they read a blog once a day and 80% say monthly. Despite those impressive numbers, however, keep in mind that 90% view daily TV news. In his mind blogs are distinguished by opinion and aggregation. They are typically conversational not observational, but there are there some exceptions such as pharma and politics where blogs have broken new news. Yes, blogs skew to a young, male and educated and are therefore open to being elitist. Blogs won’t necessarily help inform the public, because ‘more’ isn’t necessary ‘better.’ One factor that may distinguish policy blogs from personal diary blogs is whether there is appreciable advertising revenue.