Medpedia, the Medical Wikipedia, is Dead. And we Missed its Funeral…

In a post about Wikipedia in 2009 I suggested that initiatives like Ganfyd or Medpedia, might be a solution to Wikipedia’s accuracy and credibility problems, because only health experts are allowed to edit or contribute to the content of these knowledge bases.

MedPedia is a more sophisticated platform than Ganfyd, which looks more like a simple medical encyclopedia. A similar online encyclopedia project with many medical topics, Google Knol, was discontinued by Google as of May 1, 2012.

But now it appears Medpedia may have followed Google KNOL into the same blind alley.

Medpedia was founded in 2007 [2a] by James Currier, an entrepreneur and investor [2b], and an early proponent of social media. He founded the successful Tickle in 1999, when the term Web 2.0 was coined, but not yet mainstream. And his list of  investments is impressive: Flickr, Branchout and Goodreads for instance.

On its homepage Medpedia was described as a “long term, worldwide project to evolve a new model for sharing and advancing knowledge about health, medicine and the body.”
It was developed in association with top medical schools and organizations such as Harvard, Stanford, American College of Physicians, and the NHS. Medpedia was running on the same software and under the same license as Wikipedia and aimed both at the public and  the experts. Contrary to Wikipedia only experts were qualified to contribute to the main content (although others could suggest changes and new topics). [3, 4 , 5, 6] In contrast to many other medical wikis, Medpedia featured a directory of medical editor profiles with general and Medpedia-specific information. This is far more transparent than wikis without individual author recognition [5].

Although promising, Medpedia never became a real success. Von Muhlen wrote in 1999 [4] that there were no articles reporting success metrics for Medpedia or similar projects. In contrast, Wikipedia remains immensely popular among patients and doctors.

Health 2.0 pioneers like E-Patient Dave (@ePatientDave) and Bertalan Meskó (@berci) saw Medpedia’s Achilles heel right from the start:

Bertalan Meskó at his blog Science Roll [7]:

We need Medpedia to provide reliable medical content? That’s what we are working on in Wikipedia.

I believe elitism kills content. Only the power of masses controlled by well-designed editing guidelines can lead to a comprehensive encyclopaedia.

E-patient Dave (who is a fierce proponent of participatory medicine where everyone, medical expert or not, works in partnership to produce accurate information), addresses his concern in his post

“Medpedia: Who gets to say what info is reliable?” [8]

The title says it all. In Dave’s opinion it is “an error to presume that doctors inherently have the best answer” or as Dave summarizes his concern: “who will vet the vetters?”

In addition, Clay Shirky noted that some Wikipedia entries like the biopsy-entry were far more robust than the Medpedia entries [9,10 ].

Ben Toth on the other hand found the Atrial Fibrillation-Medpedia item better than the corresponding Wikipedia page in some respects, but less up-to-date [11].

In her Medpedia review in the JMLA medical librarian Melissa Rethlefsen [5] concludes that “the content of Medpedia is varied and not clearly developed, lacks topical breadth and depth and that it is more a set of ideals than a workable reference source. Another issue is that Medpedia pages never ranked high, which means its content was hardly findable in today’s Google-centric world.

She concludes that for now (2009) “it means that Wikipedia will continue to be the medical wiki of choice”.

I fear that this will be forever, for Medpedia ceased to exist.

I noticed it yesterday totally by coincidence: both my Medpedia blog badge  and Mesko’s Webicina-“Medical Librarianship in Social Medicine”-wiki page were redirected to a faulty page.

I checked the Internet, but all I could find was a message at Wikipedia:

‘It appears that Medpedia is now closed but there is no information about it closing. Their Facebook and Twitter feeds are still open but they have not been updated in a few years. Their webpage now goes to a spam site.

I checked the Waybackmachine and found the “last sparks of life” at January 2013:

This morning I contacted Medpedia’s founder James Currier, who kindly and almost instantly replied to all my questions.

These are shown (with permission) in entirety below.

=============================================================================

[me: ] I hope that you don’t mind that I use LinkedIn to ask you some questions about Medpedia.

{James:] I don’t mind at all!

Is Medpedia dead? And if so, why was it discontinued?

For now it is. We worked on it for 6 years, had a fantastic team of developers, had fantastic partners who supported us, had a fantastic core group of contributors like yourself, and I personally spent millions of dollars on it. In other words, we gave it a really good effort. But it never got the sort of scale it needed to become something important. So for the last two years, we kept looking for a new vision of what it could become, a new mission. We never found one, and it was expensive to keep running.
In the meantime, we had found a new mission that Medpedia could not be converted into, so we started a new company, Jiff, to pursue it. “Health Care in a Jiff” is the motto. Jiff continues the idea of digitizing healthcare, and making it simple and transparent for the individual, but goes after it in a very different way. More info about Jiff here: https://www.jiff.com and here https://www.jiff.com/static/news. Jiff has taken our time and attention, and hopefully will produce the kinds of benefits we were hoping to see from Medpedia.

Why weren’t people informed and  was Medpedia quietly shut down?

We definitely could have done a better job with that! I apologize. We were under a tight time frame due to several things, such as people leaving the effort, technical issues around where the site was being hosted, and corporate and tax issues after 6 years of operating. So it was rushed, and we should have figured out a way to do a better job of communicating.

Couldn’t the redirection to the spam-site be prevented? And can you do something about it?

I didn’t know about that! I’ll look into it and find out what’s going on.*

Your LinkedIn profile says you’re still working for MedPedia. Why is that? Are there plans to make a new start, perhaps? And how?

Yes, I haven’t updated my LinkedIn profile in a while. I just made that change. We have no current plans to restart Medpedia. But we’re always looking for a new mission that can be self sustaining! Let me know if you have one.

And/or do you have (plans for) other health 2.0 initiatives?

Jiff is our main effort now, and there’s a wonderful CEO, Derek Newell running it.

I know you are a busy man, but I think it is important to inform all people who thought that Medpedia was a good initiative.

Thank you for saying you thought it was a good initiative. I did too! I just wish it had gotten bigger. I really appreciate your questions, and your involvement. Not all projects flourish, but we’ll all keep trying new ideas, and hopefully one will break out and make the big difference we hope for.

*somewhat later James gave an update about the redirection:

By the way, I asked about the redirect, and found out that that that page is produced by our registrar that holds the URL medpedia.com.

We wanted to put up the following message and I thought it was up:

“Medpedia was a great experiment begun in 2007.
Unfortunately, it never reached the size to be self sustaining, and it ceased operations in early 2013.
Thank you to all who contributed!”

I’m going to work again on getting that up!

============================================================================

I have one question left : what happened with all the materials the experts produced? Google Knol gave people time to export their contributions. Perhaps James Currier can answer that question too.

I also wonder why nobody noticed that Medpedia was shut down. Apparently it isn’t missed.

Finally I would like to thank all wo have contributed to this “experiment”. As a medical librarian, who is committed to providing reliable medical information, I still find it a shame that Medpedia didn’t work.

I wish James Currier all the best with his new initiatives.

References

1. The Trouble with Wikipedia as a Source for Medical Information
   (https://laikaspoetnik.wordpress.com) (2009/09/14)
2. [a] Medpedia and [b] James Currier , last edited at 6/30/13*  and 7/12/13 respectively (crunchbase.com)
3. Laurent M.R. & Vickers T.J. (2009). Seeking Health Information Online: Does Wikipedia Matter?, Journal of the American Medical Informatics Association, 16 (4) 471-479. DOI: 10.1197/jamia.M3059
4. von Muhlen M. & Ohno-Machado L. (2012). Reviewing social media use by clinicians, Journal of the American Medical Informatics Association, 19 (5) 777-781. DOI: 10.1136/amiajnl-2012-000990
5. Rethlefsen M.L. (2009). Medpedia, Journal of the Medical Library Association : JMLA, 97 (4) 325-326. DOI: 10.3163/1536-5050.97.4.024
6. Medpedia: Reliable Crowdsourcing of Health and Medical Information (highlighthealth.com) (2009/7/24)
7. Launching MedPedia: From the perspective of a Wikipedia administrator (scienceroll.com) (2009/2/20)
8. Medpedia: Who gets to say what info is reliable? (e-patients.net/) (2009/2/20)
9. Clay Shirky at MLA ’11 – On the Need for Health Sciences Librarians to Rock the Boat (mbanks.typepad.com) (2011
10. Wikipedia vs Medpedia: The Crowd beats the Experts (http://blog.lib.uiowa.edu/hardinmd/2011/05/31
11. Medpedia and Wikipedia (nelh.blogspot.nl) (2009/10/08)
12. Jiff wants to do for employer wellness programs what WordPress did for blogs (medcitynews.com)
13. Jiff Unveils Health App Development Platform, Wellness Marketplace (eweek.com)

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MedLibs Round 2.6

Welcome to this months edition of MedLib’s Round, a blog carnival of “excellent blog posts in the field of medical information”.

This round is a little belated, because of late submissions and my absence earlier this week.
But lets wait no longer …..!

Peer Review, Impact Factors & Conflict of Interest

Walter Jessen at Highlight HEALTH writes about the NIH Peer Review process. Included is an interesting video, that provides an inside look at how scientists from across the US review NIH grant applications for scientific and technical merit. These scientists do seem take their job seriously.

But what about peer review of scientific papers? Richard Smith, doctor, former editor of the BMJ and a proponent of open access publishing, wrote a controversial post at the BMJ Groups Blog called “scrap peer review and beware of “top journals“. Indeed  the “top journals” publish the sexy stuff, whereas evidence comprises both the glamorous and the unglamorous. But is prepublication peer review really that bad and should we only filter afterwards?

In a thoughtful post at his Nature blog Confessions of a (former) Lab Rat another Richard (Grant) argues that although peer review suffers terribly from several shortcomings it is still required. Richard Grant also clears up one misconception:

Peer review, done properly, might guarantee that work is done correctly and to the best of our ability and best intentions, but it will not tell you if a particular finding is right–that’s the job of other experimenters everywhere; to repeat the experiments and to build on them.

At Scholarly Kitchen (about what is hot and cooking in scholarly publishing) they don’t think “peer review“ is a clear concept, since the list of ingredients differ per journal and article. Read their critical analysis and suggestions for improvement of the standard recipe here.

The science blogosphere was buzzing in outrage about the adding a corporate nutrition blog sponsored by PepsiCo to ScienceBlog (i.e see this post at the Guardian Science Blog). ScienceBlogs is the platform of eminent science bloggers, like Orac, Pharyngula and Molecule of the Day. After some bloggers left ScienceBlog and others threatened to do so, the Pepsico Blog was retracted.

An interesting view is presented by David Crotty at Scholarly Kitchen. He states that it is “hypocritical for ScienceBlog’s bloggers to have objected so strenuously: “ScienceBlogs has never been a temple of purity, free of bias or agenda.” Furthermore the bloggers enjoy more traffic and a fee for being a scienceblogger, and promote their “own business” too. David finds it particularly ironic that these complaints come from the science blogosphere, which has regularly been a bastion of support for the post-publication review philosophy. Read more here.

Indeed according to a note of Scienceblog at the disappeared blog their intention was “to engage industry in pursuit of science-driven social change”, although it was clearly not the right way.

The partiality of business, including pharma, makes it’s presence in and use of Social Media somewhat tricky. Still it is important for pharma to get involved in web2.0. Interested in a discussion on this topic? Than follow the tags #HCSM (HealthCare Social Media) and #HCSMEU (Europe) on Twitter.
Andrew Spong, has launched an open wiki, where you can read all about #HCSMEU.

The value of journal impact factors is also debatable. In the third part of the series “Show me the evidence” Kathleen Crea at EBM and Clinical Support Librarians @ UCHC starts with an excerpt of an article with the intriguing title “The Top-Ten in Journal Impact Factor Manipulation”:

“The assumption that Impact Factor (IF) is a number absolutely proportional to science quality has led to misuses beyond the index’s original scope, even in the opinion of its devisor.”

The post itself (Teaching & Learning in Medicine, Research Methodology, Biostatistics: Show Me the Evidence (Part 3)b) is not so much about evidence, but offers a wealth of information about  journal impact factors, comparisons of sites for citation analysis, and some educational materials for teaching others about citation analysis. Not only are Journal Citation Reports and SCOPUS discussed, but also the Eigenfactor, h-index and JANE.

Perhaps we need another system of publishing and peer review? Will the future be to publish triplets and peer review these via Twitter by as many reviewers as possible? Read about this proposal of Barend Mons (of the same group that created JANE) at this blog. Here you can also find a critical review of an article comparing Google Scholar and PubMed for retrieving evidence.

Social Media, Blogs & Web 2.0 tools

There are several tools to manage the scientific articles, like CiteULike and Mendeley. At his blog Gobbledygook Martin Fenner discusses the pros and cons of a new web-based tool specifically for discussing papers in Journal Clubs: JournalFire

At the The Health Informaticists they found an interesting new feature of Skype:  screen sharing. Here you can read all about it.

Andrew Sprong explains at his blog STweM how to create a PDF archive of hashtagged tweets using whatthehashtag?! and Google Docs, Scribd or Slideshare. A tweet archive is very useful in case of  live tweet or stream sessions at conferences. (each tweet is then labeled with a # or hashtag, but tweets are lost after a few days if not archived)

At “Cool Toy of the Day” Patricia Anderson posts a lot about healthcare tools. She submitted Cool Toys Pic of the day – Eyewriter“, a tool for allowing persons with ALS and paralysis to draw artwork with their eyes. But you find a lot more readworthy posts at this blog and her main blog Emerging Technologies Librarian.

Heidi Allen at Heidi Allen Digital Strategy started a discussion on the meaning of social-medicine for Physicians. The link to the original submission doesn’t work right now, but if you follow this link you see several posts on social-medicine, including “Physicians in Social Media”, where 3 well-known physicians give their view on the meaning of social-medicine.

Dr Shock at Dr Shock MD PhD, wonders whether “the information on postpartum depression in popular lay magazines correspond to scientific knowledge?” Would it surprise you that this is not the case for many articles on this topic?

The post of Guus van den Brekel at DigiCMB with the inspiring title Discovering new seas of knowledge partly goes about the seas of knowledge gained at the EAHIL2010 (European Association for Health Information and Libraries) meeting, with an overview of many sessions, and materials when possible. And I should stress when possible, because the other  part of the post is about the difficulty of obtaining access to this sea of knowledge. Guus wonders:

In this age of Open Access, web 2.0 and the expectancy of the “users” -being us librarians (…) one would assume that much (if not all) is freely available via Conferences websites and/or social media. Why then do I find it hard to find the extra info about those events, including papers and slides and possibly even webcasts? Are we still not into the share-mode and overprotective to one’s own achievements(….)

Guus makes a good point,especially in this era, when not all of us are able to go and visit far away places. Luckily we have Guus who did a good job of compiling as much material as possible.

Wondering about the evidence for the usefulness of web 2.0, then have a look at this excellent wiki by Dean Giustini: http://hlwiki.slais.ubc.ca/index.php/Evidence-based_web_2.0.
The Health Librarianship Wiki Canada (the mother wiki) has a great new design and is a very rich source of information for medical librarians.

Another good source for recent peer reviewed papers about using social media in medicine and healthcare is a new series by Bertalan Mesko at Science Roll. First it was called Evidence Based Social Media News and now Social media journal club.

EHR and the clinical librarian.

Nikki Dettmar presents two posts on Electronic Health Records at Eagledawg.net, inspired by a recent Medical Library Association meeting that included a lot about electronic health records (EHRs). In the first part “Electronic Health Records: Not All About the Machine” she mentions the launch of an OpenNotes study that “evaluates the impact on both patients and physicians of sharing, through online medical record portals, the comments and observations made by physicians after each patient encounter.” The second post is entitled “a snapshot of ephemeral chaos“. And yes the title says it all.

Bertalan Mesko at Science Roll describes a try out of a Cardiology Resident and Research Fellow in Google Wave to see whether that platform is suitable for creating a database of the electronic records of a virtual patient. The database looks fine at first glance, but is it safe?

Alisha764’s Blog celebrated its 1 year anniversary in February. Alisha Miles aim for the next year is to not only post more but to focus on hospital libraries including her experience as a hospital librarian. Excellent idea, Alisha! I liked the post Rounding: A solo medical librarian’s perspective with several practical tips if you join the round as a librarian. I hope you can find time to write more like this, Alisha!

Our next host is Walter Jessen at Highlight HEALTH. You can already start submitting the link to a (relevant) post you have written here.

See the MedLibs Archive for more information.

Photo Credits:

• Librarian’s Costume by Librarian Avenger
• http://eyewriter.org/images/

Practicing Medicine in the Web 2.0 Era

Many people don’t get Web 2.0 – and certainly not Medicine 2.0.

Just the other day a journalist asked me if the redesigned PubMed could be called PubMed 2.0.
I said: “well no….no… not at all” ….Web 2.0 is not merely tools or fancy looks, it is another way of producing and sharing information and new web tools facilitate that. It is not only simplicity, it is participation. PubMed has changed it looks, but it is not an interactive platform, where you can add or exchange information.

Well anyway, I probably didn’t succeed to explain in just a few sentences what Web 2.0 is and what it isn’t. For those that are unfamiliar with Web 2.0 and/or how it changes Medicine, I highly recommend the following presentation by Bertalan Mesko (of ScienceRoll and Webicina), who explains in a clear and nontechnical way what it is all about.

By the way Bertalan is a finalist with ScienceRoll in the 2009 Medical Weblog Awards (category Best Medical Technologies/Informatics Weblog). He could surely use your vote. (here you can vote in this category). You can see all Finalist here.

Related articles by Zemanta

• Dermatology and Web 2.0: Selected Online Resources (scienceroll.com)
• Slideshow: Practicing Medicine in the Web 2.0 Era (casesblog.blogspot.com)
• The 2009 Medical Weblog Awards: it is time to nominate your favorite blogs (laikaspoetnik.wordpress.com)
• Webicina.com: 2009 Summary (scienceroll.com)
• The 2009 Medical Weblog Awards Finalists (medgadget.com)
• I’ve got Good News and I’ve got Bad News (laikaspoetnik.wordpress.com)

BlogWorld Expo [SOTB]: Two Additional Videos

Today I learned there were two more videos realted to the BlogWorld Expo, that I shouldn’t withhold you.

First, the ABC News Covered the Medblogger Track At Blog World Expo. Here is an interview with Dr. Val Jones with Dave Lucas of ABC.

The video “Medical Bloggers On ABC News: Empowering Patients With Accurate Information” is summarized as follows at her blog Get Better Health:

….”Dave Lucas is tired of all the false health information that fills his email inbox each day. He’s very relieved that there are physicians, nurses, and patient advocates “swimming against the tide” of pseudoscience and misleading health information online. Today Dave and I discussed how people can find accurate and potentially life-saving health information through peer-reviewed medical blogs, thanks to the health blogger code of ethics (administered by MedPage Today)”.

Another interview was with Paul Levy, President and CEO of Beth Israel Deaconess Medical Center in Boston, and author of Running a Hospital. Paul participated in a panel discussion as part of the Medblogger Track (co-sponsored by Johnson & Johnson and MedPage Today). Because the video is barely audible, I just mention his main statements (highlighted in red in the video shown here at the JNJ Health Channel):

• Paul writes his blogposts without any prior permission or approval process
• It is quicker to fix a mistake on a blog, than it is in traditional media
• Biggest regret is responding to sarcastic or hostile comments in kind instead of staying above the fray

Medical Bloggers On ABC News: Empowering Patients With Accurate Information

Web 2.0 and Health Care Reform: Two Dutch Examples (1)

The theme for the next Grand Round hosted by Healthcare Technology News is Healthcare Reform.

“We’ll be publishing a wide range of articles, from those that share anecdotes about why we need to improve the health care system, to examples of innovations and care that are working well, through to the policy recommendations that we need.”

Although I easily could give some anecdotal examples from the past about “failures or shortcomings” in Healthcare, I prefer to give some positive examples of how a web 2.0 approach can bring patients and doctors together. There are numerous examples of successful application of web 2.0 tools by patients to find and share information and to improve the management of their disease. There are also many healthcare people who use web 2.0 tools to write down their experiences (blogs, social media), to get their information (RSS) and to put information on the web (wiki’s) for patients or colleagues. There are hospitals that are actively engaged in social media and that facilitate patients to use these tools to gather information, but I’ve seldom seen a real web 2.0 based patient-doctor collaboration…. till recently…. close to home in Nijmegen at the Zorg 2.0 (Health 2.0) event, organized by Lucien Engelen (twitter: zorg20; and on linkedin). In fact, the whole meeting was a success with lots of interesting lectures (i.e. from Bertalan Mesko of Scienceroll and Maarten Lens Fitzgerald of Maarten’s Journey.) and workshops.

All podcasts of the Zorg 2.0 event can be seen here

Two presentations were given by two professors on patient centered care in the so called award winning initiative MijnZorgNet (MyCareNet): Bas Bloem and Jan Kremer.

I will discuss their two presentations in separate posts.

This post will summarize the presentation of Bas Bloem, neurologist from the UMC St Radboud Ziekenhuis Nijmegen and initiator of the Parkinson Center.

Bas Bloem began with his “take home message” (with which I couldn’t agree more):

Health 2.0 is not “the world of gadgets”, but a new way of thinking in healthcare:

1. the patient becomes centric, care becomes collaborative: the patient is not passive, he is “equal” to the healthcare provider. It isn’t “he asks, we provide”, but the patient definitively has a voice (and choice) in his own healthcare.
2. coherent and transparent healthcare.
3. expertise (few experts, but with very specialized knowledge).

He set up a program for Parkinson care delivery networks, first in the surroundings of Nijmegen and later throughout the Netherlands. Although his talk is about Parkinson, it can be seen as a model for all kinds of complex diseases.

Bas is an idealist. He believes most healtcare people choose their job to really help people. Doctors choose to care. Only the system doesn’t help them to realize this.

To change this, a paradigm shift is needed. Healthcare needs to be centered round the patient:

1. The patient has the right to see the best specialist -in a structured way; the assessment of the patient is “CENTRAL”, in an intramural setting, i.e. by a neurologist. In the present example, people from the first line can easily contact the specialists or plan an appointment in their agenda. In this way the patient is helped promptly and he notices the good cooperation between the two lines.
2. Daily healthcare is close to home, only performed by a handful of specialists (i.e. physiotherapists) specially trained to treat Parkinson patients. This is called the ParkinsonNet. Patients rather have someone with expertise who is within a 20 minutes distance, than a less experienced person round the corner.
3. There is optimal communication between the “two layers”.
4. The patient plays an active role.

How is this organized?

1. When the patient is referred to the neurologist, he first has to fill in a screening list and has to prioritize 5-10 health problems, which he/she would like to discuss when visiting the Day Center. So one patient may want to see a sexologist, a dietitian and a physiotherapist and an other a rehabilitation physician, gerontologist and a neurologist.
2. Doctors and patients sit round a table, each in the same position (no hierarchy).
3. Consumer reviews are shown (anonymously) on the Internet. This makes healthcare transparent. When scores are bad some action should be taken to improve it.

How is this achieved?

1. Selection of experts who get education (via e learning etc), on basis of geographic distribution. Patients have to travel a bit more, healthcare is canalized,
2. All healthcare workers work according a multidisciplinary guideline. Patients were active co-producers of the guideline.
3. Implementation (see above)
4. Yellowpages (paper and digital version) have been made of healtcare providers, enabling patients to choose.
5. Indicators are developed, patients are invited to give feedback and to grade the healthcare (providers). If someone performs bad, (gets the red card) he/she may ultimately be taken out of the network.

The experiment of patient empowerment in Parkinson’s Disease management has grown from very small (region Nijmegen) to almost national. The blank region (see Figure) is not included to be able to assess the effectiveness of this system compared to the traditional approach.

The next step is the creation of a virtual community. This is certainly important and not out of reach for the elderly. A transmural electronic health record is available (Parkinson dossier) both for the patient and the healthcare worker.

Slides (Dutch): http://www.slideshare.net/lucienengelen/bloem-zorg-20-maart-2009
——————————-

Vodpod videos no longer available.

more about “4. Zorg20 Event Spring 2009 | Keynote…“, posted with vodpod

See http://www.vimeo.com/4271353

* Since the video stuck half way, I may have missed part of the presentation.

Grote Visite 1.5 (Dutch Grand Round)

Welcome to the October 21, 2008 edition of ‘grote visite’ or Dutch Grand Rounds.

This week there were 6 submissions to the blog carnival, only 2 of which were genuine (Dutch/health-related/not-commercial/no-spam).

Jan Martens of MedBlog.nl refers to an interesting article on Reuters about teleradiology and remote medicine. During the night shift medical images of patients in for instance the United States and Singapore are sent for appraisal to Indian radiologists because of lower costs and shortage of staff at night. Jan gives various examples of other interesting applications, but wonders whether this kind of telemedicine will be easily implemented in the Netherlands.

I know what lumpers and splitters are, but I’m not familiar with lurkers. As explained by Dr Shock MD PhD, with respect to online support groups, posters are the ones actively engaged by sending postings, and lurkers the ones that use online support groups in a passive way. Dr Shock summarizes recent research, revealing that participation in an online support group had the same overall profound effect on lurkers’ self-reported feelings of being empowered as it had on posters. Please read more details about the research at Dr. Shock’s excellent post “Lurkers in Health 2.0, Do They Benefit?”

By the way, Dr Shock has many other recent interesting posts as well and has an international reputation as medical blogger. For instance Pallimed hosting this week Grand Round refers to dr Shock as follows:

Dr. Shock consistently comes up with some very interesting journal articles. I really appreciated his take on impact of medical student biases towards patients with mental illness. So you may read that one as well!

******************************************************************************************

Below are my own choices from blogs form the Dutch medical blogosphere. I hope it will inspire other Dutch Medical Bloggers to participate more actively in the Dutch Grand Rounds.

The blog Health Management Rx of Jenn McCabe Gorman is already reviewed in another blog carnival, i.e.Medicine 2.0 Blog Carnival Edition #33.

People from SugarStats talked with Jennifer McCabe Gorman, one of Health 2.0’s most ‘visible’ online evangelist as they called her. By the way Jennifer wants you to know that her blog, Health Management Rx, is not dead. The reason her posts have been slow is because she is intensively preparing for Health 2.0: User-Generated Healthcare conference, which will be held in San Francisco, California from October 22nd – 23rd 2008.host

Of course we already knew that Health Management Rx was not dead, because Jenn hosted the previous Dutch Grand Round.

Many other Dutch Bloggers are also heavily involved in health 2.0, and many of them are also on Twitter. For instance apart from Jenn: @mdbraber (also in San Fransisco at the moment), @martijnhulst of martijnhulst.nl, @Zorg20 of www.azo.nl (Acute Zorgregio Oost) and @fackeldeyfinds of fackeldeyfinds.com.

October 10th, most of these twitterers were attending the master thesis presentation of Maarten Den Braber (mdbraber) about the value of business models for hospitals, either live in Enschede or virtually (livestreaming!). Interested in this subject? You can find the links to the final document and the powerpoint he used for his presentation on this blogpost.

Below are some excerpts from other MEDNL-blogs, all in Dutch

A previous host of de Grote Visite, Marjolein Fermie of “De gezondheidszorg leuker en effectiever” gives a short overview of what makes working (in Healthcare) fun.
Another C3-log-ger, Frank Wolterink reflects about franchising health using the same franchise methods as fast-food chain McDonald’s (and others). Very aptly called: ‘Franchising Health Instead of French Fries’ in another (english) post on delivering health care.
Bettinepluut discusses the new “zorgplan” and wonders whether this will really improve the living environment of patients

At A day in the life of a shrink there is a very interesting post on “the” critical care physicians of today, who completely rely on scans and lab results without physical examining and sometimes without even having real contact with the patient. Apart from unnecessary long waiting for some diagnosis (i.e. prominent pancreas cancer metastases felt instantly), this can make the patient feel very lonely. People aren’t numbers!

This blog has numerous posts on music, as has Vrouwmenszorg.web-log, a very nice diary-like blog of a family physician. From Music (Pink Floyd, In a gadda da vida, Child in Time: my style!) and beautiful photo’s to ‘a day in the life of’: “No, don’t dial 911 for an ambulance, but take a taxi and see your doctor first”. Sometimes she writes for Paramedic WorldWide.

Wonder what Vrouwmenszorg or Paramedic Worldwide would think of my previous post on (acute) care (for Addison patients). Apparently paramedics are allowed to give infusions to diabetic patients with a hypo. Read the story “met gillende sirene door de stad” (here) about a young diabetic who hurries too much (and eats too little) on the first day of his new job.

Another colorful blog on acute care, music and personal matter is 100% Mike. One of his post begins with mentioning a very special legacy of his mother: ice creams she won in a contest. The same night an elderly woman came in for a paracetamol, but had to stay for pneumonia and lung embolisms.

Another blog about acute care, from an emergency nurse: ECGreetje. Easy to digest information on hobbies (shopping) and acute (heart) care. Here latest post is on the (recently published) positive effect of the song Stayin’ Alive of the Bee Gees on heart resuscitation, not only because of the text but more so because of the beat, which is exactly the rhythm one should use for a successful resuscitation attempt: ~103 beast per minute. ECGreetje, however, is afraid that she will start dancing when listening to this song.

The Quack (and the Scream) from http://forthebirdsblog.blogspot.com/

The provocative physicians Dr. Lutser and Creiptocheilus keep on ranting against (alternative) QUACK. Dr Lutser, who takes a blog pause for a while, is highly surprised that the advocate of the controversial anti-cancer “medicine” DCA (Dichloroacetic acid), Wim Huppes, does not use this or any other alternative medicine himself, now his cancer has returned.

Cryptocheilus mentions at his blog that he has been banned from the forum of the tv program TROS-RADAR, because he was considered too offensive against mister Braam, another ‘healer’. “C’est la ton qui fait la musique”, perhaps? Good reasoning convinces more than ranting. In his earlier post, Cryptocheilus shows some examples of selective use of evidence and ‘misinterpretation’ of a Cochrane Review by Braam. Pitty that Tros-Radar only hears the tone, without understanding the text.

Finally, clinical librarian and second life specialist Guus den Brekel of DigiCMB has some interesting post on SL, for instance about how to spend an $60,000 grant for a project entitled “AIDS Information and Outreach in the Virtual World of Second Life”. He also gives a nice overview of customizabe-widgets, i.e. for blogs, technology and education.

Liked the review of your post? Would have liked a review of your post? Like to read (some of the) posts? Then Huize Sonnendael, MedBlog, Patient en EPD, Man in de Zorg, Sister Nightfall, Zorglog, Ervaringen met een verpleeghuis, Cees Sterk, Zorg voor klanten, Manager zorg vertelt, Club Confabula, Over ZN, Zo! Communicatie, Ouderenzorg in de nieuwe werkelijkheid, De gezonde patient, Medisch Contact, Huntingtondaily.web-log.nl, MediGO, MaCoAd, Verpleeghuisarts.web-log.nl, Aria Rad, Herre Kingma, Metabool.web-log.nl, Werken in de zorg, Fontys Mediatheek, Ambupleeg, Weblog voor fysiotherapeuten, Verpleegkundige, Dokter Rob, Trimbos Online 2011, Pekke.nl, Electroconvulsive Therapy, Zorggemak.nl en Bas Leerink’s Blog as well as and some of the abovementioned bloggers become a lurker too, or perhaps a poster!

Contributing is very simple, just copy the link to the post that you would like to submit here (the blogcarnival).

Just want to read: the next carnival will be hosted November 4th at Dr Shock MD PhD.

Please contribute to the upcoming Dutch Grand Rounds, so we can advocate health blogs in the Netherlands and keep informed about each other work! Mag ook in het Nederlands, hoor! Graag zelfs!

CC (2) Duodecim: Connecting patients (and doctors) to the best-evidence

This is the second post in the series Cochrane Colloquium (CC) 2008.

In the previous post, I mentioned a very interesting opening session.

Here I will summarize one of the presentations in that opening session, i.e. the presentation by Pekka Mustonen, called:

Connecting patients to the best-evidence through technology: An effective solution or “the great seduction”?

Pekka essentially showed us what the Finnish have achieved with their Duodecim database.

Duodecim was started as a health portal for professionals only. It is a database (a decision support system) made by doctors for doctors. It contains Evidence Base (EBM) Guidelines with:

• regularly updated recommendations
• links to evidence, including guidelines and Cochrane Systematic Reviews
• commentaries

Busy Clinicians don’t have the time to perform an extensive search to find the best available evidence each time they have a clinical question. Ideally, they only would have to carry out one search, taking not more than one minute to find the right information.

This demand seems to be reasonably met by Duodecim.

Notably, Duodecim is not only very popular as a source for clinicians ànd nurses, the guidelines are also read and followed by them. Those familiar with healthcare know that this is the main obstacle: getting doctors and nurses to actually use the guidelines.

According to Pekka, patients are even more important than doctors to implement guidelines: Half of the patients don’t seem to follow their doctor’s advice. If the advice is to keep on inhaled steroids for long-term management for asthma, many patients won’t follow that advice, for instance. “When you reach patients, small changes can have large benefits”, he said.

However, although many patients rely on internet to find health information, formal health information sites face fierce competition on Internet. It is difficult for consumers to separate chaff from wheat:

Still, Duodecim has managed to make a website for the general public that is now as popular as the original physicians database is for doctors, the only difference being that doctors use the database continuously, whereas the general public just consults the database when they are confronted with a health problem.
The database contains 1000 EBM key articles, where the content is integrated with personal health records. The site looks rather straightforward, not glitzy nor flashy. Intentionally, in order to look like a serious and trustworthy professional health care site.

A survey revealed that Duodecim performed a lot better than Google in answering health care questions, and does lead to more people either deciding NOT to consult a physician (because they are reassured), or deciding to consult one (because the symptoms might be more serious than thought). Thus it can make a difference!

The results are communicated differently to patients compared to doctors. For instance, whether it is useful to wear stockings during long-haul flights to prevent deep venous thrombosis in patients that have either a low or a high risk for thrombosis is explained to the physician in terms of RR, ARR, RRR and NNT.
Patients see a table with red (high risk patients) and green columns (low risk patients). Conclusions will be translated as follows:

If 1000 patients with a low risk for DVT wear stockings on long-haul flights

• 9 will avoid it
• 1 will get it
  
• 1 out of 1000 (will get it)
• 990 use stocking in vain

If 1000 patients at high risk for DVT wear stockings on long-haul flights:

• 27 will avoid it
• 3 will get it
  
• 1 out of 333 (will get it)
• 970 use stocking in vain

This database will be integrated with permanent health records and virtual health checks. It is also linked to a tv program with the aim of changing the way of living. Online you can do a life expectancy test to see what age you would reach if you continue your life style as you do (compare “je echte leeftijd”, “your real age”[dutch]).

“What young people don’t realize”, Pekka said, is that most older people find that the best of life starts at the age of 60(?!) Thus, it doesn’t end at 30, as most youngsters think. But young people will only notice, when they reach old age in good health. To do this, they must change their habits already when young.

The Finnish database is for free for Finnish people.

Quite coincidentally (asking for a free usb-stick at the Wiley stand 😉 ) I found out that Wiley’s database EBM Guidelines links to the Duodecim platform (see below). Quite interesting to take a trial, I think.

(Although this presumably is only the professional part of Duodecim, thus not the patient oriented database.)

Laika’s Little Party

It’s time for some reflections on this blog and for a little party. Why?

• This blog has just reached the magic milestone of 10.000 counts (I’m still waiting for Wowter to claim his price). [party + reflections]
• This blog received some nice critiques, comments and listings. [party]
• Wowter has asked appr. 90 dutch library bloggers, including me, to write about our motives for blogging, who whe reach, whether we succeed in building a community, which posts we like most etc. He will present a selection of the carnival at a Dutch congres on Library 2.0 (OCN). [reflections]

So for now I will start with the party (with some wine), the reflections will follow when I’m sober.

This week I received an unexpected email from RNCentral (“the place to learn about nursing online”), anouncing that this blog had made it to the “Top 50 Health 2.0 Blogs list ( see here).

The top 50 health 2.0 list is not based on a kind of “objective” ranking like the Healthcare 100 or MedBlogEN lists, which are a measure of how many people link to your site, find your site by searching or have subscribed to your blogposts: thus an indirect measure of “how popular you are“. In such a list I would not make the top-100.
The RNCental site gives a “subjective” top 50 list of blogs, that appear valuable to the authors. The list is introduced with a very nice definition of health 2.0 blogs, that I can subscribe to:

Health 2.0 embraces the idea of bringing health care into the community of physicians, patients, and those in the health care industry together with technology and the Internet to provide the best possible health care environment. What better way for the various parts of this community to share their thoughts and communicate ideas than through their blogs? From corporate blogs to blogs that are a part of social networks to individual blogs touching on technology or health care policy, these blogs will help bring you into the community, provide information and resources, and may perhaps help you find your voice as well.

I’m thrilled that I’m (literally) placed next to David Rothman in the “Health and Technology”-section. Although, to be honest, I see myself as a true beginner in this web 2.0 world and I learn a lot of established web 2.0 experts like David Rothman, KraftyLibrarian, Berci of Science Roll, MD Anderson on Emerging Technologies Librarian, Dean Giustini (UBC Academic Search), Sachet62 on Twitter, symtym from symtym.com, David Bradley from Sciencebase and Dutch colleagues like Wowter (with a dutch and an english blog), Dymphie (Dee’tjes) and many many more. On my blog I try to integrate what I learn elsewhere (articles, posts, twitter messages) with my own knowledge and interest.

The resultant is a rather diverse mixture of subjects in the field of (medical) librarianship, medicine, health (including consumers), evidence based medicine and web 2.0 tools.

Although such a broad mixture might not be appealing to everyone, it is appreciated by some, as is apparent from a recent blog-review in the “Library + Information Gazette“, 22 August 2008: p5 (UK). The Gazette is only available in print edition and I wouldn’t have known about it if Anne Welsh of “First Person Narrative” had not mentioned it at her blog (see post: “mainstreaming blogs as information sources”). Anne:

“This review is the first in a series “Blog Spotlight” authored by Danielle Worster (the Health Informaticist). It’s aim is to help separating the wheat from the chaff when it comes to blogs in LIS and health informatics.

Any blog that claims to be about information, research, Web 2.0 or health informatics is considered. Each blog discussed is described in terms of its audience, currency, informativeness, authoritativeness / credibility, readability and design, with a brief overview and summary. It’s a nice format, and starts well in this issue with UBC Academic Search , ResearchBuzz and Laika’s MedLibLog.”

With Anne I find it regretful that the gazette is not available online. I surely would like to follow this series.

Luckily I found Keith Nockels (Browsing) willing to make a scan of the Gazette’s review and send it to me.

The Gazette review sketched my blog with very flattering sentences (“colourful, engaging and relevant”, “easy to read and digest”) as well as apt descriptions, which made me grin: “while it does stray to discuss….. Although she writes copious amounts, it is as easy to skim as to read it all…. crammed full of visuals.”

And about Dean’s UBC Academic Blog:

“Very informative: has an uncanny ability to pick up on crucial issue”. …. the blogger’s energy comes through in his shorter sentences….. essential reading.” All true! Dean’s blog is a must in the librarian web 2.0 world!

Apart from these official listings and reviews I got some comments or links that were also heartwarming.

For instance Keith Nockels (a UK Librarian with a nice blog (“Browsing”), apparently familiar with at least a few Dutch words) refers so nicely in his blogpost “More about changes to Ovid”:

“I have since found a posting on Laikas MedLibLog about this, and Laika has obviously looked at this properly! So, I can now report that you (….)
Laikas posting is here (in English and ook in Nederlands) and is gratefully acknowledged. She talks about other things besides, so please read her posting for more!”

And Dr. Shock announcement of the dutch grand round number 1:

Laika Spoetnik presents The Best Study Design… For Dummies (in English).
She writes in English and Dutch so you have no excuse for not reading this excellent post. She clearly explains Randomized Controlled Trials (RCT’s) and the levels of evidence. She uses an example which is easy to follow: Does beta carotene prevent lung cancer.

At Medliblog (the official website of the BMI, Dutch Biomedical Information) Annie (writing about Evidence Based Dietetics refers to the same post, saying:

….handige bijlages met een checklist voor het lezen van wetenschappelijke artikelen en een statistische begrippenlijst, dat laatste blijft toch altijd wel moeilijke stof voor dummies of alfa’s.
Voor die categorie heeft Laika een zeer begrijpelijke blog (zowel Engels- als Nederlandstalig) geschreven, waarvoor mijn dank. Zo’n presentatie zou ik ook wel willen bijwonen.

meaning:

For that category (dummies or alpha people not understanding checklists and studytypes) Laika has written a very comprehensible blogpost (in English and Dutch), for which I would like to thank her. I would have loved to attend such a presentation. (I gave to historians about “how doctors search”).

These comments strengthen me to continue blogging. This is why I blog: that (some) people like to read what I write and learn from some of the posts.

Well that is probably enough shameless self-glorification for now. I do realize that beginners get mild critiques, but as you get more well known the expectations will grow along and the critiques as well.

Next time, at request of Wowter, I will reflect more on the 5W’s of this blog: why, when, who, what, where?