Health Experts & Patient Advocates Beware: 10 Reasons Why you Shouldn’t be a Curator at Organized Wisdom!! #OrganizedWisdom

11 05 2011

Last year I aired my concern about Organized Wisdom in a post called Expert Curators, WisdomCards & The True Wisdom of @organizedwisdom.

Organized Wisdom shares health links of health experts or advocates, who (according to OW’s FAQ), either requested a profile or were recommended by OW’s Medical Review Board. I was one of those so called Expert Curators. However, I had never requested a profile and I seriously doubt whether someone from the a medical board had actually read any of my tweets or my blog posts.

This was one of the many issues with Organized Wisdom. But the main issue was its lack of credibility and transparency. I vented my complaints, I removed my profile from OW, stopped following updates at Twitter and informed some fellow curators.

I almost forgot about it, till Simon Sikorski, MD, commented at my blog, informing me that my complaints hadn’t been fully addressed and convincing me things were even worse than I thought.

He has started a campaign to do something about this Unethical Health Information Content Farming by Organized Wisdom (OW).

While discussing this affair with a few health experts and patient advocates I was disappointed by the reluctant reactions of a few people: “Well, our profiles are everywhere”, “Thanks I will keep an eye open”, “cannot say much yet”. How much evidence does one need?

Of course there were also people – well known MD’s and researchers – who immediately removed their profile and compared OW’s approach with that of Wellsphere, that scammed the Health Blogosphere. Yes, OW also scrapes and steals your intellectual property (blog and/or tweet content), but the difference is: OW doesn’t ask you to join, it just puts up your profile and shares it with the world.

As a medical librarian and e-patient I find the quality, reliability and objectivity of health information of utmost importance. I believe in the emancipation of patients (“Patient is not a third person word”, e-patient Dave), but it can only work if patients are truly well informed. This is difficult enough, because of the information overload and the conflicting data. We don’t need any further misinformation and non-transparency.

I belief that Organized Wisdom puts the reputation of  its “curators” at stake and that it is not a trustworthy nor useful resource for health information. For the following reasons (x see also Simon’s blog post and slides, his emphasis is more on content theft)

1. Profiles of Expert Curators are set up without their knowledge and consent
Most curators I asked didn’t know they were expert curators. Simon has spoken with 151 of the 5700 expert curators and not one of those persons knew he/she was listed on OW. (x)

2. The name Expert Curator suggests that you (can) curate information, but you cannot.
The information is automatically produced and is shown unfiltered (and often shown in duplicate, because many different people can link to the same source). It is not possible to edit the cards.
Ideally, curating should even be more than filtering (see this nice post about 
Social Media Content Curators, where curation is defined as the act of synthesizing and interpreting in order to present a complete record of a concept.)

3. OW calls your profile address: “A vanity URL¹”.

Is that how they see you? Well it must be said they try to win you by pure flattery. And they often succeed….

¹Quote OW: “We credit, honor, and promote our Health Experts, including offering: A vanity URL to promote so visitors can easily share your Health Profile with others, e.g. my.organizedwisdom.com/ePatientDave.
Note: this too is quite similar to the Wellsphere’s approach (read more at E-patients-net)

4. Bots tap into your tweets and/or scrape the content off their website
(x: see healthcare content farms monetizing scheme)

5. Scraping your content can affect your search rankings (x)
This probably affects starting/small blogs the most. I checked two posts of well known blogs and their websites still came up first.

6.  The site is funded/sponsored by pharmaceutical companies.
 “Tailored” ads show up next to the so called Wisdom Cards dealing with the same topic. If no pharmaceutical business has responded Google ads show up instead.
See the form where they actually invite pharma companies to select a target condition for advertizing. Note that the target conditions fit the OW topics.

7. The Wisdom Cards are no more than links to your tweets or posts. They have no added value. 

8. Worse, tweets and links are shown out of context.
I provided various examples in my previous post (mainly in the comment section)

A Cancer and Homeopathy WisdomCard™ shows Expert Curator Liz Ditz who is sharing a link about Cancer and Homeopathy. The link she shares is a dangerous article by a Dr. who is working in an Homeopathic General Hospital, in India “reporting” several cases of miraculous cures by Conium 1M, Thuja 50M and other watery-dilutions. I’m sure that Liz Ditz, didn’t say anything positive about the “article”. Still it seems she “backs it up”. Perhaps she tweeted: “Look what a dangerous crap.”
When I informed her, Liz said:“AIEEEE…. didn’t sign up with Organized Wisdom that I know of”. She felt she was used for credulous support for homeopathy & naturopathy.

Note: Liz card has disappeared (because she opted out), but I was was surprised to find that the link (http://organizedwisdom.com/Cancer-and-Homeopathy/wt/medstill works and links to other “evidence” on the same topic.


9. There is no quality control. Not of the wisdom cards and not of the expert curators.
Many curators are not what I would call true experts and I’m not alone: @holly comments at a Techcrunch postI am glad you brought up the “written by people who do not have a clue, let alone ANY medical training [of any kind] at all.” I have no experience with any kind of medical education, knowledge or even the slightest clue of a tenth of the topics covered on OW, yet for some reason they tried to recruit me to review cards there!?! )

The emphasis is also on alternative treatments: prevention of cancer, asthma, ADHD by herbs etc. In addition to “Health Centers”, there also Wellness Centers (AgingDietFitness etc) and Living Centers (BeautyCookingEnvironment). A single card can share information of 2 or 3 centers (diabetes and multivitamins for example).

And as said, all links of expert curators are placed unfiltered, even when you make a joke or mention you’re on vacation. Whether you’re a  Top health expert or advocate (there is a regular shout-out) just depends on the number of links you share, thus NOT on quality. For this reason the real experts are often at lower positions.

Some cards are just link baits.

 

10.  Organized Wisdom is heavily promoting its site.
Last year it launched activitydigest, automatic digests meant to stimulate “engagement” of expert curators. It tries to connect with top health experts, pharma -people and patient advocates. Hoping they will support OW. This leads to uncritical interviews such as at Pixels and Pills, at Health Interview (
Reader’s Digest + Organized Wisdom = Wiser Patients), Xconomy.com organizedwisdom recruits experts to filter health information on the web.

What can you do?

  • Check whether you have a profile at Organized Wisdom here.
  • Take a good look at Organized Wisdom and what it offers. It isn’t difficult and it doesn’t take much time to see through the facade.
  • If you don’t agree with what it represents, please consider to opt out.
  • You can email info@organizedwisdom.com to let your profile as expert curator removed.
  • If you agree that what OW does is no good practice, you could do the following (most are suggestions of Simon):
  • spread the word and inform others
  • join the conversation on Twitter #EndToFarms
  • join the tweetup on what you can do about this scandal and how to protect yourself from being liable. (more details will be offered by Simon at his regularly updated blogpost)
  • If you don’t agree this Content Farm deserves HONcode certification, notify HON at  https://www.healthonnet.org/HONcode/Conduct.html?HONConduct444558
Please don’t sit back and think that being a wisdom curator does not matter. Don’t show off  with an Organized Wisdom badget, widget or link at your blog or website.  Resist the flattery of being called an expert curator, because it doesn’t mean anything in this context. And by being part of Organized Wisdom, you indirectly support their practice. This may seriously affect your own reputation and indirectly you may contribute to misinformation.

Or as Heidi’s commented to my previous post:

I am flabbergasted that people’s reputation are being used to endorse content without their say so.
Even more so that they cannot delete their profile and withdraw their support.*

For me those two things on their own signal big red flags:

The damage to a health professional’s reputation as a result could be great.
Misleading the general public with poor (yes dangerous) information another

Altogether unethical.

*This was difficult at that time.

Update May 10, 2011: News from Simon: 165 individuals & 5 hospitals have now spoken up about unfolding scandal and are doing something about it (Tuesday )

Update May 12, 2011: If I failed to convince you, please read the post of Ramona Bates MD (@rlbates at Twitter, plastic surgeon, blogger at Suture for a Living), called “More Organized Wisdom Un-Fair Play. Ramona asked her profile to be removed from OW half a year ago).  Recommended pages at her blog seem to be written by other people.
She concludes:

“Once again, I encourage my fellow healthcare bloggers (doctors, nurses, patient advocates, etc) to remove yourself from any association with Organized Wisdom and other sites like them”

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