Wikipedia: Time to Pull the Plug

There are many good reasons to deplore Wikipedia, not the least of which is its authors’ cultish smuggery about the righteousness of their cause and the rightness of their content.

Of course there is also its internecine complexity of processes. The documentation tracing the petty bitchery about an entry is often longer than the entry that is produced. The international collectivist negotiation over matters of “fact” is beginning to remind me of the United Nations, but without the fancy New York headquarters.

A recent post by e-health blogger John Grohol left me steaming anew about the nature of the entire enterprise.

The piece details a series of exchanges between a Wikipedia editor and Gilles Frydman, head of the non-profit cancer support community ACOR. The issue was the collective’s refusal to permit links to health-related support groups.

The post includes only one side of the story, and that filtered through the articulate vitriol of Grohol. So I can’t vouch for the details of the exchange. But it is accurate that Wikipedia does not permit links to support groups. [See relevant policy excerpt at end of entry.] On reflection, this astonishes me:

1. Wikipedia is designed to harness the collective intelligence of many individuals, an example of the the classic web 2.0 “wisdom of the crowds.”

2. Online support forums are designed to harness the collective intelligence of many individuals, the classic web 2.0 “wisdom of the crowds.”

Wikipedia leverages the wisdom of the crowds one way. Online support forums do so another way. But Wikipedia won’t assign value to the other–in fact as a matter of policy it pointedly excludes it. Which is to say: The power of the many is a powerful force to disseminate knowledge–except when it’s not.

The hypocrisy is remarkable. To cite just one sad example: The Wikipedia entry on amyotrophic lateral sclerosis (Lou Gehrig/Stephen Hawking disease) is workmanlike. It includes references to mainstream groups like the ALS Foundation. It even includes, god help us, a link to that font of scientific dispassion, the Ride for Life.

But it is utterly silent on the powerful ALS community of PatientsLikeMe, an unusually ambitious patient (and provider) experience- and data-sharing site. To say it serves folks who need to know about ALS far better than Wikipedia–and that it offers a greater amount of authoritative current knowledge–is to understate.

Yet Wikipedia excludes it because it is an online support group, not because it is unworthy. Wikipedia has decided–for expedience? for ideological reasons? for self-interest?–to exclude information not on the merits of an individual source but due to its information class.

It’s a sort of info-bigotry, an attempt to exclude a minority deemed less worthy based entirely on class, not merits. And Wikipedia is itself part of a larger class, web 2.0, which itself suffers similar discrimination!

If we are to exclude one style of responsibly gathering collective wisdom, should we exclude them all? Or–here’s an idea–maybe we should judge individual sources on their merits.

The trouble is, so many people around the world link to Wikipedia, it rides at the top of nearly every topic search results page. This only increases its use and ubiquity, if not hegemony. Its decisions to include and exclude data are magnified across the information universe.

I’m wondering if it’s time for concerned web citizens to stop linking to Wikipedia. If this were to catch on, it would have the effect of diminishing its ubiquity, allowing it to recede to its proper role: a useful but limited, and often deeply flawed, source of information. Just like an online support group, only bigger, and with a chip on its shoulder.

I know, of course, that this is trying to sweep back the sea with a broom. To draw on that U.N. metaphor, maybe it’s time for a different kind of collective action: Wikipedia out of the web. The web out of Wikipedia.

See a continuing conversation about the role of social media in health at this recent post at The Health Care Blog.

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[Wikipedia linking policy on support groups. Note the sniff of condescension implicit in the second paragraph. And note how the Awareness and Fundraising Events sections in its medical articles clearly violate this policy!:]

“Wikipedia’s external links policy and the specific guidelines for medicine-related articles do not permit the inclusion of external links to non-encyclopedic material, particularly including: patient support groups, personal experience/survivor stories, internet chat boards, e-mail discussion groups, recruiters for clinical trials, healthcare providers, fundraisers, or similar pages.

“Wikipedia is an encyclopedia, not an advertising opportunity or a support group for patients or their families. Please do not re-insert links that do not conform to the standard rules.”

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Google vs. Microsoft at the Health 2.0 Spring Fling

Here’s a reprint (with modifications) of a story of mine that appeared in The Washington Post today. Based on my recent visit to the Health 2.0 “Spring Fling” conference in San Diego, hosted by the brilliant and beautiful Matthew Holt and Indu Subayia, it runsdown what appears to be shaping up between Google and Microsoft in the consumer-PHR-platform space.

I’ll be adding other entries about Health 2.0 products in the coming days and weeks.

Microsoft HealthVault vs. Google Health

By Craig Stoltz, Special to The Washington Post

Personal health records, or PHRs, were the buzz at last week’s Health 2.0 Spring Fling conference in San Diego — especially recent entries by Google and Microsoft that have the rest of the industry energized, focused and at least a little bit frightened.

Bill Reid, director of Microsoft’s HealthVault program, described the effort to integrate information technology into personal health care as a “long journey. We’re just at the front end of the process.” Was this an acknowledgment of the complexity of the task ahead? Or a a shrewd way to reduce expectations about the software giant’s big investment?

Based on the tenor of the Health 2.0 conference–a high-energy gathering of great minds, big ideas and entrepreneurial hustlers–it may be both. In addition to Google and Microsoft, dozens of companies presented online products designed to make U.S. health care smarter, stronger and better looking. There was a plan by a firm called Organized Wisdom to offer online doctor consults at $1.99 per minute, a provider search tool pitched as “the match.com of health care,” and an electronic medical record by a firm called Myca that made you want to bask in the sheer beauty of ear infection data.

Here’s a look at where Microsoft’s and Google’s personal health record programs are now and where they may be headed.

What Microsoft HealthVault and Google Health have in common:

* Both companies claim the same ultimate goals: To create integrated online environments where you can create and store your personal records, get information, find doctors, make medical appointments, communicate online, manage medications, share information with providers and more. Oh, and with Microsoft and Google, there’s always that other goal: to dominate the world.

* Both put users in control over what goes into the record and who has access to it. If there’s something you’d rather not share with your employer, insurance company or anyone else, leave it out.

* Both are free Web-based services, meaning you can access the records without cost from any computer. The services are described as being as secure as online banking. Both companies pledge not to share your information without your explicit permission.

* Both offer tailored searches that promise to filter out garbage and surface the gold.

Microsoft HealthVault:

Debut: October 2007.

The story so far: Microsoft has assembled a list of companies that make products (glucometers, blood pressure monitors) or offer services (software that pulls in data from labs, hospitals, etc.) compatible with HealthVault. Use one of them, and data from the lab or your home blood pressure cuff automatically gets sucked into your HealthVault PHR. If you aren’t using one of these products or services, though, the only way to create your record now is by uploading existing documents — a recent page of bloodwork results, say — from your computer.

Follow the money: Microsoft plans to make money by placing ads next to HealthVault search results. As with any search, some are text ads generated by keywords. Some are interactive ads promoting HeathVault-compatible devices or services. Some offer related books and products from Amazon. Anyone can use the HealthVault search, but if you want to save your results privately (a nice feature), you’ll need to sign up for a free HealthVault account.

Curious observation: HealthVault’s search results are sometimes riddled with information from interested sources (supplement makers!?!) and below-gold-standard publishers. Do I really need a tailored, secure search to find a Wikipedia article on arthritis?

Google Health

Unveiled: February 2008.

The story so far: The first live-action test of Google’s PHR is a pilot project with Cleveland Clinic launched last month and expected to run six to eight weeks. Screen shots of the service suggest people can create their own PHRs via simple forms with check boxes and pull-down menus. Like Microsoft, Google plans to offer the ability to automatically pull in data (for example, X-rays and readouts from a pedometer) from devices, services and health-care providers. Google is encouraging use of open technology standards that will let the health world’s many different information systems talk to each other easily.

Follow the money: Google doesn’t rule out the possibility of selling ads alongside search results or other Google Health services but says it has no current plans to do so.

Next steps: After the Cleveland Clinic pilot, Google says it will digest what it has learned and move toward launch. No date is set.

Curious observation: So why would Google take on such a big, difficult project — creating complex data exchange systems and storing all that personal information — if there’s no way to make money? Data show more than 70 percent of people seeking health-care information turn first to Google. A strong personal health dashboard linked to other Google services, including its cash-cow search business, can make sure those health-seekers stay with Google rather than with the competition. Like Microsoft, for instance.