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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12 responses

11 05 2011
Pranab

Thanks for the heads up. While a newbie blogger like myself is unlikely to be picked up by these sites, the eclectic nature of my writing also protects me against getting farmed, I guess.

11 05 2011
laikaspoetnik

Oh …. but you’re blog was nominated by Medgadget to be one of the best new Medical Weblogs in 2010.
Possibly, Organized Wisdom doesn’t like any skeptics especially when the skepticism has spread throughout the body and the mind…..

12 05 2011
Pranab

:) and that, too, but to be honest, i would have fallen for their sugar coated mails (mainly because I’d have thought I’d get a few more readers)!

12 05 2011
laikaspoetnik

That’s the whole point, Pranab, they don’t ASK you to be part of OW, you have to opt out. But if you’re in they try to appeal to your vanity (vanity url, name: expert curator, scores for input, promising traffic etc)

12 05 2011
e-réputation des laboratoires pharmaceutiques: Pfizer, Novartis, Pierre Fabre et Roche en tête de classe « Amynos's Blog

[…] Health Experts & Patient Advocates Beware: 10 Reasons Why you Shouldn’t be a Curator at Or… (laikaspoetnik.wordpress.com) […]

12 05 2011
edrneelesh

Isn’t OW just like @HealthyRT taken to next level commercialized ?

Though when i first reviewed Organized Wisdom in October,2008 , I found it an extremely well thought out website.

Over the years, they have grown their sources without minding quality. They really need to trim down their lists. Also, the algorithms at OW need updating.

12 05 2011
laikaspoetnik

I tried to leave a note to your post from 2008 (I wonder why you tweeted this post right now), but Blogger didn’t accept my ID (tried 10 times). Therefore I comment here:
**********************************
I’m really surprised you come to this conclusion. I reached the opposite conclusion.
Major issues:
1. Profiles of Expert Curators are set up without their knowledge and consent
2.Info (often links in tweets) is shown out of context. (i.e. someone criticizing homeopathy treatment of cancer, rather seems to endorse it)
3. Info it is put there unstructured. There is no curation whatsoever. No summary.
4. There is overemphasis on CAM, anti-aging, fitness etc
5. The site seems heavily sponsored. There are ads that fit the topics.
see more at: http://laikaspoetnik.wordpress.com/2011/05/11/health-experts-patient-advocates-beware-10-reasons-why-you-shouldnt-be-a-curator-at-organized-wisdom/.
In my opinion the site is absolutely NOT reliable and even NOT useful for patients to look up medical info. In principle it might be useful to take an alert to certain profiles or info, but then the non-profit Webicina or Medworm are far better for this purpose. Or perhaps just simply follow those people on Twitter.
For general patient-info sites like Medline Plus are well suited.
It could have been a good platform, if it had an opt-in scheme, didn’t rely on technical algorithms too much, and really intended to give objective health information.
And after what I have seen, I simply don’t think that “bridging the gap” is their real intent.

12 05 2011
laikaspoetnik

No, I don’t think @HealthyRT is anyway like OW. @HealthyRT is “a peer-reviewed health feed. All links are REVIEWED for MEDICAL ACCURACY by an expert (usually MD, PhD, or RN).”
@HealthyRT is ONE simple twitterfeed, and a team ACTUALLY REVIEWS each individual tweet. That is quite unlike OW, that uses algorithms to place tweets of MD’s, PhD’s, RN’s and unqualified people in cards (whether useful or not, endorsing “the link” or not). Their info is often inaccurate and really unfiltered (that is what you hope experts will do).

11 06 2011
Janice McCallum

I’ve been skeptical of Organized Wisdom from the beginning because of their revenue model: online advertising primarily from pharmaceutical companies. With online ads as the source of revenue, the objective of the publisher becomes to aggregate as much content as possible–provided the content fits the subject categories that will attract Google AdSense or other ad networks the publisher uses. Quantity wins out over quality.

In fact, I have the same objection to other consumer health portals that rely soley on advertising support. I’m not entirely against Pharma support of consumer health information, but I think the large commercial online consumer health portals lack imagination in their business models and rely on the Web 1.0 model of attempting to capture as many eyeballs via SEO and monetize with ads. Recently, they’ve discovered that the Web 2.0 provides them with fresh sources of content that they can harvest, but there’s nothing innovative in the business model.
[See http://www.infocommercegroup.com/taxonomies for an excellent framework for content business models created by my colleagues. Harvesting is one of the valid content models in the framework, but when harvesting crossing the line, we refer to it as “pirating”.]

Frankly, I am a little bit surprised at some of my friends and colleagues who promote their OW badge on their sites. I think they like the people at OW and like being associated with the big names that are on OW’s board. It is an impressive group and the founders of OW are well-meaning as far as I can tell. But, they’ve fallen into the trap of trying to win in a game where quantity trumps quality. Note, I’ve had on my to-do list for the last month a blog post about consumer health sites with the preliminary title: For Want of a Business Model. I’ll try to get that written — and published on my own site — in the next couple of weeks.

13 06 2011
laikaspoetnik

Thanks for commenting, Janice.

First, I looked at OW just as a consumer: how valuable is the health information at OW? How objective? How trustworthy?
I don’t mind “aggregation of tweets” per se (blog posts is another issue). I do mind when my tweets are put out of context. I do mind when the emphasis is on health, beauty and “alternative treatments” The adds are yet another issue.

I am not familiar with business models, but your reasoning makes perfect sense to me.

I especially like the sentences: “Quantity wins out over quality”. (yes!) and “Recently, they’ve discovered that the Web 2.0 provides them with fresh sources of content that they can harvest, but there’s nothing innovative in the business model.” Using web 2.0 but not acting web 2.0, don’t they?

Please leave a message when you have published your post. I would love to read it.

Regarding OW. I have heard the same from (especially) many patient advocates. Again your view that “they’ve fallen into the trap of trying to win in a game where quantity trumps quality” is probably right.
I only wonder why OW tries to silence the critique. OW doesn’t discuss the issues directly, but just put a lot of positive messages (by various advocates) on Twitter. Again a web 1.0 way of using web 2.0??

13 06 2011
Chukwuma I. Onyeije, M.D.

Well said, Janice. I presume the 40,000 dollar question is how does one differentiate harvesting from pirating in such a rapidly changing content environment?

14 06 2011
Janice McCallum

Excellent question Chukwuma! One differentiator would have to be: does the original content publisher benefit from the harvesting or does all the bounty go to the pirate? [Doesn’t have to be direct monetary benefit.] Another differentiator: is there an agreement of some sort (explicit or implicit) between the parties? Downloading the OW badge onto one’s site would be an implicit agreement.

I think a “Who’s Who” type model, where OW identifies individuals they want to include and invites them to opt-in and approve their profile would have pre-empted much of the brouhaha. I wouldn’t have opted in because I object to Pharma ads surrounding my content.

So, it seems I have on my to-do list to write an article that helps define the grey area between acceptable aggregation and pirating in the current online media environment. I hope I’m up to the task!

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