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

12 07 2013

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:

11-7-2013 23-57-49 waybackmachine medpedia

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/newsJiff 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
    (http://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:
  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:
  5. Rethlefsen M.L. (2009). Medpedia, Journal of the Medical Library Association : JMLA, 97 (4) 325-326. DOI:
  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)




Your Medical Mind. How to Decide What is Right for You [Book Review]

3 10 2011

I enjoyed reading “Your Medical Mind” from start to end. The style of this book was light, but the content was not. Jerome Groopman, oncologist, and Pamela Hartzband, endocrinologist, are to be congratulated on their ability to write clearly about a difficult topic. They explain all aspects about making the right medical choices, in a way that is comprehensible to all.

What makes their book so enlightening is that Groopman and Hartzband illustrate each aspect of medical decisionmaking with real patient stories. In fact the entire book is largely based on interviews with scores of patients of different ages, of different economic status and with different medical conditions.

The authors also drew on research and insights from doctors, psychologists, economists and other experts to shed more light on forces that can aid or impede our thinking when we have to make those decisions.
For those who want to explore things further, there are 213 notes (appr. 80 pages!) and a bibliography of 20 pages at the end of the book.

The first chapter “Where am I in the numbers” deals… right… with numbers, or basic statistics. A topic that patients (and quite some doctors!) often find difficult to understand. This chapter explains Relative Risk Reduction (RRR), Control Event Rate (Basic Risk), Absolute Risk Reduction (ARR) and Numbers Needed to Treat (NNT) without hardly mentioning these terms.

The authors illustrate these and other principles with the story of Susan. Susan is a bit overweight and has a high cholesterol “of the bad kind” (LDL). Her GP concludes: “Since you’re active and already follow a healthy diet, I think it is time for medication. Fortunately, we have a good treatment for this [statins]. Here is a prescription. I’ll see you again in a month”.

But Susan doesn’t take the prescription. Why? First Susan is a doubter and a minimalist. She wants the minimum necessary, certain that “less is more”.  For this is how she was raised. Second, Susan is very much like her father, who had a similar high cholesterol, never took a pill, yet lived a long, full and healthy life. Therefore she believes that for people like her these high levels of LDL-cholesterol are not necessarily dangerous. Third, she  meets an acquaintance who suffers from debilitating muscle pain as a side effect of the statins.

When Susan’s GP hears that she decided not to take her medicine, her face tightens in concern: “It s very important to take this medication. You really need it”. She explains that statin pills will lower her risk of a heart attack over the next 10 years by as much as 30 % [RRR]. She adds that the risk of side effects is very small and often reversible.

Sinds 30% less risk of myocardial infarction (heart attack, MI) sounds impressive, Susan promised her doctor to reconsider her decision. As many other people she searches the Web for medical information. After months (!) she finds a government-sponsored link with objective patient information and a 10-year heart attack risk calculator. By entering all the requested information, she finds out that her basic MI risk is 1%. This means that 1 of 100 (or 3 of 300) people with this level of risk will have a heart attack in the next 10 years (background risk without taking treatment).

Let’s apply that benefit to a group of 300 women like Susan, where 3 of them would have a MI without taking statins. If we treat them all, we would prevent one MI—because we prevent 1 MI in 3 women (30% RRR). The other 2 women would still have a MI despite taking the medicine. The remaining 297 would not have had a heart attack even without the medication, so they wouldn’t have benefited from taking it. Thus 300 persons with this background risk need to be treated to prevent one heart attack. This is the number needed to treat (NNR).

Research has shown that people respond most profoundly to “stories”. Statistics can help to merge science with stories and fit single anecdotes into the larger context of all people who are treated. Statistics (and “evidence” in general) allows people to make an informed choice. 

Susan’s story also illustrates that framing  is very important. When you hear that a statin lowers your risk by 30% (RRR), it sounds as if you are at 100% risk and thus have a great benefit. But reframing the effect as a chance of 1 in 300 persons to have a benefit, may shift the balance for you. Susan concluded that the benefits didn’t outweigh the risks. Others may look at it another way: If there is a chance I could be the one person out of the 300 who avoids a heart attack, then the statin is 100% effective for me. 

Pharmaceutic industries understand a great deal about how people decide whether to take a medicine. They frame information about benefit in the most favorable way and exploit the power of availability bias* using carefully crafted images and anecdotes, and giving implicit messages while  marginalizing side effects.

Various studies and patient stories discussed in the book clearly show that patients choose differently when they are given clearer information about benefits and risks. Surprisingly, their choice often differs from the treatment options the experts see as “best”.

As we have seen the attitude of the doctor and the way he/she frames the medical information also matters. Susan’s GP framed the information in such a way that it overemphasized the benefits of treatment with statins, the option she saw as “best”. This GP later refused Susan as a patient, because she didn’t follow her instructions. Her next doctor: “It is the old paternalistic way of dealing with patients. Ultimately you know, patients have final control of what goes on. (….) It is not like you just go: “Boom, boom, boom, here is the prescription”.

The irony is that most people will accept the default option: they assume that what is routinely recommended is best. If it turns out differently, however, they may feel strong regret. In contrast, if the risk is taken into account beforehand, people may experience side effects less seriously. Furthermore people have a tremendous ability to adapt.

The book learns us the differences between believers and doubters, maximalists and minimalists, naturalism and technology orientation and the importance of availability bias*, omission bias*, decisional conflict, loss aversion*, expected utility*, autonomy and control.

Our preferences about treatment, may depend on our personality, the way we were raised as kids and our previous experiences. This applies to both patients and doctors. As an example, the authors explain why one of them became a believer and a maximalist and the other a doubter and a minimalist. Until some bad experience with an aggressive and unsuccessful surgery made the maximalist a bit more risk-averse.

The book offers several examples of doctors  advocating treatments on basis of their beliefs or expertise. A surgeon wants to cure prostate cancer by surgery while focusing on the unacceptable sides of radiation, while radiation therapists emphasize unacceptable side effects of surgery. Yet others make a case for “watchful waiting”.
More than before, I realize that choices are highly personal and that I, too, have my own preferences. For instance, I tend to favor watchful waiting in case of low risk prostate cancer, possibly because I am a doubter in most respects, and have worked with Prof Schröder who supports watchful waiting. However, for some men this watchful waiting may become watchful worrying and they might just prefer to get the cancer out. Even at the cost of sexual and urinary function.

Interesting is also the notion that “the best” doctors or the “most renowned hospitals” may not always be the best for you. An expert who looks totally bored, saying you’re a “typical case” may give you an anonymous feeling. A nurse’s silent shrug when you express dismay about losing a lot of weight, may reinforce this sense. This can be a reason to clinch to your own community hospital and not choosing a large, bustling cancer center.

Another AHA moment for me was about end of life decisions, described in the touching chapter 8. The authors describe that nearly half of the patients were inconsistent in their wishes about what therapies they wanted, whether they had completed a living will or advance directive or not. This is because they often can’t imagine what they will want and how much they can endure when their condition shifts from healthy to sick and then to even sicker. On the other hand rigid sticking to directives may pose a dilemma to the carer. Are resuscitation and intubation allowed as temporary interventions if not meant to artificially sustain life?

In short, “Your Medical Mind” is an interesting and instructive book, that is not only of value for patients and carers, but also for doctors ànd future patients (and remember everyone is a patient sometimes).

Does this mean that “Your Medical Mind” is an “essential companion that will show us how to chart a clear path through this sea of confusion” as the book flap and introduction promise?

And is it true that the answer to the question “How do you know what is right for you? lies not with the experts, but within you?”

These seem too ambitious claims.

For a good decision process knowing your preferences and the forces that can influence your choice, is not enough. A good health literacy is important too. Apart from a chapter that deals with statistics, this book offers little info on that topic.

What about minimalistic naturalists who choose a homeopathic treatment for cancer? This choice might fit the medical mind of those patients, and of course they have every right to make their own decisions, but is it truly “right for them”?

I get the impression that the authors underestimate the value of “evidence”. They are very skeptical, not only about pharmaceutical companies, but also about recommendations in guidelines, whether they are evidence based or not.

In the examples all treatments are almost equally effective. This leaves a grey zone for where there is no black and white answer about when and how to treat. Often, some treatments are superior to others (for certain patient groups).

Thus, the authors give little attention to the importance of objective medical information itself, as a basis for decision making. They also pay no attention to shared decision making, as e-patient Dave emphasizes in his review.

Still, I loved the book. It completes my knowledge of EBM and information sources.

It also made me curious about another book by Groopman “How doctors think” , which has rapidly risen to the top of the New York Times bestseller list since its release in March 2007.  Dr Shock just reviewed it. Perhaps we should exchange our books….

Title: Your Medical Mind
Author: Jerome Groopman, M.D., Pamela Hartzband, M.D.
Publisher: The Penguin Press
Book: Hardcover, 320 pages
Buy: Amazon.com

  • availability bias: overweighting evidence that comes easily to mind.
  • loss aversion: the reluctance to risk side effects for what is pursued to be a small benefit
  • expected utility = [probability x outcome) X (utility of outcome)
  • omission bias: avoiding treatment because of anticipation of regret




Engage with Grace in Gratitude

25 11 2010

Last year I participated in what is called a “blog rally” to promote Engage With Grace – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes. This year I would like to participate again.

The blog rally is timed to coincide with Thanks Giving, an annual tradition celebrated on the fourth Thursday in November in the USA.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. I’ve included them at the end of this post. They’re not easy questions, but they are important — and believe it or not, most people find they actually enjoy discussing their answers with loved ones. The key is having the conversation before it’s too late.

These are the 5 questions to discuss (follow the link to fill in the form).

theoneslide

It is a variation on the slide below: Would you and your love ones even want to discuss these?

To learn more please go to www.engagewithgrace.org.
This post is an adapted version of the post originally written by Alexandra Drane and the Engage With Grace team.





Breast Cancer is not a Pink Ribbon.

20 10 2010

I have always had mixed feelings in case of large happenings like marches and ribbon activities and cancer months. September is the ovarian cancer month (and also a US Prostate Cancer Month and a childhood cancer month) and  October the breast cancer month…. We have only 12 months in a year!

Please, don’t misunderstand me! Awareness is very important, also in the case of breast cancer: Awareness so to recognize breast cancer in an early stage, awareness of preventive measures of cancer,  awareness what women with breast cancer go through, awareness that breast cancer often can be cured, awareness that research is needed, and thus money.

But I also feel that the attention is overdone and often hypocritical, with fancy pink ribbons and “pink”: everywhere. This feeling is strengthened by some recent articles. For instance this article in Health.Chance.org, called Pink Ribbon Hypocrisy: Boozing It Up for Breast Cancer discussing that fast food and alcohol companies Use Breast Cancer as a Marketing Ploy (whereas these items some reputation if it comes to -certain types of- cancer). You can sign a petition here against it.

There is even a book Pink Ribbon Blues – How Breast Cancer Culture Undermines Women’s Health, written by Gayle A. Sulik, that is “thought-provoking and probing argument against the industry of awareness-raising”

From the description:

Pink ribbon paraphernalia saturate shopping malls, billboards, magazines, television, and other venues, all in the name of breast cancer awareness. (…) Gayle Sulik shows that though this “pink ribbon culture” has brought breast cancer advocacy much attention, it has not had the desired effect of improving women’s health. It may, in fact, have done the opposite. Based on eight years of research, analysis of advertisements and breast cancer awareness campaigns, and hundreds of interviews with those affected by the disease, Pink Ribbon Blues highlights the hidden costs of the pink ribbon as an industry, one in which breast cancer has become merely a brand name with a pink logo.

The following quote from a woman who had lost her mother to breast cancer illustrates the feeling of many (see comments):

As the years went by, life provided me with more reasons to hate pink. Frustration over society-defined gender roles piled on as did annoyance at the image of ultimate feminine woman. And then came the big one.

Breast cancer.

My mom passed away after a six-year long battle with breast cancer at the age of 45.

When pink later became symbolic of breast cancer awareness, I wanted to punch some pink piggies. I know that some people choose to wear pink to honor or remember or show support for a loved one. That is not what I get my panties in a bunch about–it’s the way corporate America has grabbed that pink flag and waved it to and fro for their own profit that makes me furious.

I remember once standing in the grocery store and staring at a bag of pink ribbon-adorned M&Ms, my blood boiling harder with every passing second.

She ends her post with:

Everyone has a story. Some have seen the scars of a mastectomy. Some have witnessed the toll that chemotherapy takes on a body. Some have lived the pain. We all know it’s bad.

I, for one, don’t need pink to remind me.

That same is true for me. I’ve seen my mother battling breast cancer -she is a survivor- and I have seen the scars of mastectomy and these are nowhere near pink ribbon.

“Breast Cancer is not a Pink Ribbon” tweeted Gilles Frydman yesterday and he meant a great pictures exhibition that lasted 3 days, showing portraits of young topless breast cancer survivors shot by fashion photographer David Jay.

At first I found it mainly confronting: this is the reality of breast cancer! As described elsewhere (Jezebel):

Seeing scarred and reconstructed mammary glands is not just shocking because of the way breasts are fetishized in our society, but because it speaks to how much we hide, gloss over and tidy up disease. Breasts are one of the defining physical attributes for identifying a woman. Breast cancer eats away at flesh meant to nourish. Surgery is a brutal procedure from which to recover and heal. But cute, clean, pink ribbons have come to symbolize all that.

But at a second and third look, I mainly saw the beauty of the photo’s, the fierceness of the women and their beautiful eyes.

Exactly as put into words at the website of the SCAR project:

Although Jay began shooting The SCAR Project primarily as an awareness raising campaign he was not prepared for something much more immediate . . . and beautiful: “For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease.

SCAR by the way stands for ‘Surviving Cancer. Absolute Reality.”

David Jay was inspired to act when a dear friend was diagnosed with breast cancer at the age of 32.

The SCAR-project is “dedicated to the more than 10,000 women under the age of 40 who will be diagnosed this year alone The SCAR Project is an exercise in awareness, hope, reflection and healing. The mission is three-fold: Raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens.”

The exhibition was last week in New York, but you can still see the photographs at the website of the SCAR-project.

Furthermore, you can participate in the project and/or buy the (signed) SCAR project book ($55).

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Stories [8] How Not to Reassure (or Treat) a Patient

23 08 2010

The host of the next edition of the Grand Rounds is Fizzziatrist at A Cartoon Guide to Becoming a Doctor. Thus it is no surprise that the theme of this edition is “Humor in Medicine”. The Fizzziatrist:

When I host Grand Rounds, I will post the links in order of how many times each one made me go “ha!” (…) It’s all quite scientific.

Well that’s a tough job. First both as a medical librarian and  a patient, I’m not in the situation to experience a lot of the humorous aspects of a doctors job. Furthermore I’m not the HA-HA-HA LOL-REAL SCREAM type. I’m more of the smile and the grin.

So what to do? I hope you find the following enjoyable. And perhaps many little ha’s do make one big HA.

——————–

How not to reassure (or treat) your patients (own experience)

My GP (the leading character in this story; he resembles a bull in a china shop, sometimes, but other than that, he is o.k.)

  • At one of my first visits he was trying to (manually) find the card of my husband. 
    When he thought he found it, he muttered:
    “that old guy?”
    Apparently he had mistaken my father (I still had my maiden name) for my partner.
    Lucky (both for me and my gp)  he was wrong. But how embarrassing if he
    had been right.

    wikipedia (CC)

  • Once I phoned him for I don’t know what and he said:
    “I’m not seeing  you often”
    “Why, is that bad?”
    “Well, it is exceptional”
    “Exceptional?”
    “Yes, I see women of your age regularly”

    “For what kind of disease, if I may ask”.
    “Well, the flu .. and for pill or IUD-controls”
    [sneering] “Sure, but I’m never seriously ill and I have a gynecologist for the latter”.
  • When I was pregnant of my second child, I phoned him for a prescription for anti-Rh antibodies, which I needed for prenatal testing. Since I hadn’t visited my gynecologist after my first child, and the hospital nurses had assured me that gp’s and midwives normally prescribed, this should not be a problem.
    I began: “I’m a few weeks pregnant and ….”
    He interrupted me, confused: “but that..….. but ….. you were pregnant a few months ago“.
    He was half right. I had had a miscarriage then. (Dang! A heavy blow)
    After a curt explanation, I hung up.
  • Later he phoned me back (with a thin excuse) and I asked him for the anti-Rh antibodies, but he just didn’t get it.
    Ask your  midwife”.
    “But I don’t have a midwife”
    “Everyone has got a midwife, nowadays”
    “No, I got a gynecologist”
    “Then  ask your gynecologist”
    “But  I’m not his patient anymore”
    “Then ask him to be your doctor again”
    “But I need the prescription right now“.

    I tried to convince him in vain. He finally mumbled something like: That is of my beat, I don’t do pregnancies and deliveries anymore.
    [luckily one phone call to the gynecologists' wife was enough to get the prescription. She passed the message immediately, and said that if I liked him to take care of me again, it was best to make an appointment soon after the test.]
  • My gp had the same attitude another time.  I had signs of a Addison crisis. I tried to explain to him what might be wrong. He asked one or two things, shrugged and then said: “You better make an appointment with your specialists. This disease is beyond my practice.”
    At the time it seemed ok to me, but my endocrinologist said it was irresponsible: “Suppose he wouldn’t immediately refer someone with an acute crisis: that could be fatal. [I was hospitalized in this case, but it was not that urgent] See also “the Doctor and the Patient”
The Doctor, by Sir Luke Fildes (1891)

Image via Wikipedia

My gynecologist/obstetrician [a friend of mine recommended him, because he was kind and puts you at ease. It really is a wonderful doctor, and after all those deliveries he still considered birth a miracle. However, his way of reassuring was not always effective]. 

  • March 31, late afternoon: “It is time to get your baby ( 2,5 weeks post-term), but we better postpone it for two days. It is not such a nice day to celebrate the child’s birthday, don’t you think” (meaning April Fools day)
  • When I had my first check-up he warmed the speculum, trying to break the ice with some humor: “they do warm the cutlery for each course at the Chinese”, don’t they?
    (I found it rather tasteless, but remained silent: he meant it well)
  • When we discussed where I would deliver, he said that that would be in his hospital. I sighed with relief. As any new mother I was nervous about it.
    But he didn’t want me to have false expectations:
    Of course I hope I can personally deliver your baby. However, the chances are real that someone else will be around at that time. But believe me, if the moment is there, you don’t care who stands at the foot of your bed. Even if it is a gorilla..”

My Dentist (the best, most skillful, pleasant dentist there is, but still ….  a dentist)

  • Once, just finished drilling, she said carefully: “Don’t be scared when you look into the mirror….. I just touched your tongue”.

This concludes my experiences.  If you would like to read more serious stuff about “how (not) to reassure”, then you can read this old article The Art Of Reassurance (PDF) or this recent blog post at « HealthSkills WeblogIs reassurance reassuring?

One main advise (from the latter blog):

Never reassure a patient about something they are not already worried about. It would be a mistake, for example, to earnestly reassure patients that they do not have cancer when the thought had never entered their minds!”

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FDA to Regulate Genetic Testing by DTC-Companies Like 23andMe

14 06 2010

Direct-to-consumer (DTC) genetic testing refers to genetic tests that are marketed directly to consumers via television, print advertisements, or the Internet. This form of testing, which is also known as at-home genetic testing, provides access to a person’s genetic information without necessarily involving a doctor or insurance company in the process. [definition from NLM's Genetic Home Reference Handbook]

Almost two years ago I wrote about 23andMe (23andMe: 23notMe, not yet),  a well known DTC company, that offers a genetics scan (SNP-genotyping) to the public ‘for research’, ‘for education’ and ‘for fun’:

“Formally 23andMe denies there is a diagnostic purpose (in part, surely, because the company doesn’t want to antagonize the FDA, which strictly regulates diagnostic testing for disease). However, 23andme does give information on your risk profile for certain diseases, including Parkinson”

In another post Personalized Genetics: Too Soon, Too Little? I summarized an editorial by Ioannides on the topic. His (and my) conclusion was that “the promise of personalized genetic prediction may be exaggerated and premature”. The most important issue is that predictive power to individualize risks is relatively weak. Ioannidis emphasized that despite the poor evidence, direct to consumer genetic testing has already begun and is here to stay. He proposed several safeguards, including transparent and thorough reporting, unbiased continuous synthesis and grading of the evidence and alerting the public that most genetic tests have not yet been shown to be clinically useful.

And now these “precautionary measures” actually seem to happen.
Last week the FDA sent 5 DTC-companies, including 23andMe a letter saying “their tests are medical devices that must receive regulatory approval before they can be marketed.” (ie. see NY-times article).

Alberto Gutierrez, who leads diagnostic test regulation at the FDA, wrote in the letters:

“Premarket review allows for an independent and unbiased assessment of a diagnostic test’s ability to generate test results that can reliably be used to support good health care decisions,”

These letters are part of an initiative to better explain the FDA’s actions by providing information that supports clinical medicine, biomedical innovation, and public health,” (May 19 New England Journal of Medicine commentary, source: see AMED-news)

Although it doesn’t look like the tests will be taken from the market, 23andMe does take a quite a rebellious attitude: one of its directors called the FDA “appallingly paternalistic.”

Many support this view: “people have the right to know their own genetic make-up”, so to say. Furthermore as discussed above, 23andMe denies that their genetic scans are meant for diagnosis.

In my view the latter is largely untrue. At least 23andMe suggests that knowing a scan does tell you something about your risks for certain diseases.
However, the risks are often not that straightforward. You just can’t “measure” the risk of a multifactorial disease like diabetes by “scanning” a few weakly predisposing  genes. Often the results are given in relative risk, which is highly confusing. In her TED-talk the 23andMe director Anne Wojcicki said her husband Sergey Brin (Google), had a 50% chance of getting Parkinson, but his relative risk (RR, based on the LRRK2-mutation, which isn’t the most crucial gene for getting Parkinson) varies from 20% to 80% , which means that this mutation increases his absolute risk of getting Parkinson from 2-5% (normal chance) to 4-10% at the most. (see this post).

Furthermore, as reported by Venture in Nature (October 8, 2009): For seven diseases, 50% or less of the predictions of two companies agreed across five individuals (i.e. for one disease: 23andMe : RR 4.02, and Navigenics RR: 1.25). On the other hand *fun* diagnoses could lead to serious concern in, or wrong/unnecessary decisions (removal of ovaries, changing drug doses) by patients.

There are also concerns with regard to their good-practice standards, as 23andMe just flipped a 96-wells plate of costumer DNA (see Genetic Future for a balanced post), which upset a mother noticing that her son didn’t have compatible genes. But lets assume that proper precautions will prevent this to happen again.

There are also positive aspects: results of a preliminary study showed that people who find out they have high genetic risk for cardiovascular disease are more likely to change their diet and exercise patterns than are those who learn they have a high risk from family history. (Technology ReviewGenetic Testing Can Change Behavior).

Furthermore, people buy those tests themselves and, indeed, there genes are their own.

However, I agree with Dr. Gutierrez of the FDA saying: “We really don’t have any issues with denying people information. We just want to make sure the information they are given is correct. (NY-Times). The FDA is putting the consumers first.

However, it will be very difficult to be consistent. What about total body scans in normal healthy people, detecting innocent incidentilomas? Or what about the controversial XMRV-tests offered by the Whittemore Peterson Institute (WPI) directly to CFS- patients? (see these posts) And one step further (although not in the diagnostic field): the ineffective CAM/homeopathic products sold over the counter?

I wouldn’t mind if these tests/products would be held up to the light. Consumers should not be misled by the results of unproven or invalid tests, and where needed should be offered the guidance of a healthcare provider.

But if tests are valid and risk predictions correct, it is up to the “consumer” if he/she wants to purchase such a test.

—————–

What Five FDA Letters Mean for the Future of DTC Genetic Testingat Genomics law Report is highly recommendable, but couldn’t be accessed while writing the post.

[Added: 2010-06-14 13.10]

  • Problem assessing Genomics Law Report is resolved.
  • Also recommendable: the post “FDA to regulate genetic tests as “devices”” at PHG Foundation. This post highlights that simply trying to classify the complete genomic testing service as “a device” is inadequate and will not address the difficult issues at hand. One of the biggest issues is that, while classifying DTC genetics tests as devices is certainly appropriate for assessing their analytical validity and direct safety, it does not and cannot provide an assessment of the service, thus of the predictions and interpretations resulting from the genome scans.  Although standard medical testing has traditionally been overseen by professional medical bodies, the current genomic risk profiling tests are simply not good enough to be used by health care services. (see post)
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Friday Foolery [26] Nightmare turns into DreamNight (at the Zoo)

5 06 2010

Today I took the plunge, changed clothes at work, “jumped” into my old running shoes and went off for a 8.5 km run homeward. Just outside the building I heard a couple whisper “accident” and I saw several  ambulances driving towards the highway. Half a kilometer down the road ambulances were still leaving the hospital. There was a continuous wailing sound. Everywhere were ambulances, police-cars and fire-engines. Something big must have happened. A disaster on the highway perhaps?

It looked like this:

Crossing the bridge over the highway, I didn’t see anything, not even the usual Friday evening rush hour. …

I stopped to twitter and searched for “accident”. There seemed to be a serious accident on the A2-highway, but this was further South.

Finally at home (it took me longer than I had hoped) I checked Twitter again. It seemed that there had not been an accident or disaster, it was no excercise, it was the once yearly Dreamnight at the zoo. This is:

“an annual and entrance-free eveningopening of a zoo exclusively for chronically ill and disabled children, their parents and brothers and sisters”

The ambulances and other vehicles are just their (loud) escort to the zoo.

This year it is exactly 15 years ago that the dreamnight-project was born. The first edition was held in the Sophia’s Children Hospital in Rotterdam – The Netherlands: 175 very ill children came with their parents and siblings…. all together some 750 special guests were entertained.

When European zoos joined, the name “Dreamnight at the Zoo” was introduced. Later dreamnight got other partners, like museums and attraction parks.

The night is meant to give VIC’s (very important children) and their parents an unforgettable evening. Police, fireman and paramedics also help to make it a memorable day. Today was a bright and sunny day. I’m sure the children and their families had a great evening.

It really is a project that is well worth the effort. It is the  dream of the organizers that all Zoos in the world once will call the first Friday of June (or December in Australia) the “dreamnight at the zoo”….

For more information, see the website http://www.dreamnightatthezoo.nl/[5 languages] or contact info@dreamnightatthezoo.nl

There is also a special site for Artis dreamnight: http://www.dreamnightatartis.nl/(Dutch)







E-Patients & I-Patients?

24 05 2010

I read an interesting post -or perhaps rather a kick-off for a discussion- at Lucien Engelen’s posterous blog:

“To be or not to be : E-patient or I-Patient.

Lucien feels that e- and i-patients are not the same:

  • An e-patient is a (ex-) patient able to advocate patients rights, needs, experiences and able to advice healthcare institutions in a neutral way on steps to be made in REshaping healthcare, so more an ambassador-role.
  • An i-patient is a patient who uses the internet for information, sharing moods, questions experiences etc.

People who comment on his post do not see the need for a division between e- and i-patients.

Freek Bodemeijer for instance found that the division would make no sense as nowadays almost all Western patients use the Internet to look up information. In his view the ambassador role goes beyond the usage of e-tools.

E-patient “par excellence” E-Patient Dave deBronkart has more or less the same opinion: two overlapping memes are harmful from a marketing perspective,  but in the academic / analyst world a taxonomy of E-patient subtypes would be helpful.

While I agree that creating more terms (and certainly abbreviations) is not always clarifying and while I’m also skeptic that one can force new definitions, Lucien touches upon an important aspect: “when is an e-patient an e-patient?”

The definition of E-patients is not unequivocal.

Wikipedia, the e-medium also for e-medicine (although not always as accurate as we would like it to be [1]) defines e-patients as follows:

e-Patients (also known as Internet Patient, or Internet-savvy Patient) are health consumers who use the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members (e-Caregivers) who go online on their behalf. (…)”

According to another definition (also mentioned Wikipedia):

They [e-patients] are equipped, enabled, empowered, engaged, equals, emancipated and experts:

  • Equipped with the skills to manage their own condition.
  • Enabled to make choices about self-care and those choices are respected.
  • Empowered
  • Engaged patients are engaged in their own care
  • Equals in their partnerships with the various physicians involved in their care
  • Emancipated
  • Expert patients can improve their self-rated health status, cope better with fatigue and other generic features of chronic disease such as role limitation, and reduce disability and their dependence on hospital care.
These two definitions of e-patients are overlapping but certainly not identical.
Use of Internet is necessary but not sufficient to become an E-patient in the latter sense (from now on written with a capital E to indicate the difference)

So in a way the former e-patient is what Lucien calls an “an i-patient”, a health consumer who uses the Internet to gather information about his/her/a friends or a relative’s disease.

This i-patient definition is in line with the definition and the current use of the word e-health:
eHealth (also written e-health) is a relatively recent term for healthcare practice which is supported by electronic processes and communication. (…) some would argue it is interchangeable with health care informatics (…), while others use it in the narrower sense of healthcare practice using the Internet. The term can encompass a range of services that are at the edge of medicine/healthcare and information technology, i.e.

But this definition does no right to the true meaning of e-health. I agree with the one-liner of Prof Bas Bloem, who initiated Parkinson Net in the Netherlands [2]

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

Similarly, an E-patient compares to an i-patient (or e-patient) as a real web 2.0 attitude compares to being on Facebook or using whatever Web 2.0 tool.

Web 2.0 is “sharing”, in contrast to Web 1.0 which is “finding”.

So Lucien’s i/e-patient is only finding information and a true E-patient is sharing his/her own experience or knowledge to learn more about a disease him-/herself or to inform and help others. Some of these empowered patients grow into an ambassador role.

To be really empowered, patients should (generally)* not act on their own, they need other patients, doctors (and/or other healthcare worker) too. For real engagement all have to share knowledge, experience, thoughts and information.

And as an information specialist I have to add, that finding information doesn’t mean a lot, if the information isn’t reliable. Many patients (and alas also doctors) adopt Internet information, without checking the source.
How did the anti-vaccine sentiment become so powerful? Why do so many people turn to ineffective alternative medicine? Dr Google also feeds hypochondria.
Admittedly there are many success stories of patients finding crucial new information via the Internet, that wasn’t provided by their doctor. But good care doesn’t stop there.

So, although we do not need to invent new names, the awareness should grow, that the E-patient doesn’t not stop where dr Google ends, it is not passive, needs the involvement of doctors too and requires the (free) availability of good information on the Internet.

For this we need a ReShape, I agee with Lucien. But the reshape has already begun with patient-advocates like E-patient Dave, Gilles Frydman (@gfry on Twitter) and Sussanah Fox of e-patients.net of  and with the initiatives of doctors like Bas Bloem and Jan Kremer in the Netherlands, who created the award winning initiative MijnZorgNet (MyCareNet).

Active, well-informed, E-patients are central to this Health 2.0 movement, but not the only players.

*dependent on the nature of the disease; in case of prevention or less serious conditions, the patient/person might not need to see a doctor.

Related Posts on this Blog:

  1. The Trouble with Wikipedia as a Source for Medical Information
  2. Web 2.0 and Health Care Reform: Two Dutch Examples (1)
  3. The Web 2.0-EBM Medicine split. [1] Introduction into a short series
  4. The Doctors & the Patient




The Doctors & the Patient.

25 04 2010

Once there was a woman with secondary Addison’s disease. She took her replacement medicine (cortisol, thyrax, growth hormone, DHEAs) as she should and everything was reasonably under control.

However, gradually she began to feel weak. She often disliked food, sometimes to such an extent that she had an urge to vomit. After a month or so, she began to feel dizzy, especially when standing up. Then her heart suddenly banged very quickly against her chest. It felt frightening.

Her work wasn’t going well in this period. Feeling weak and not being able to sleep, she could not concentrate and often felt like she could just cry or lay  down on the floor, because she was so extremely, extremely tired.
But it was a busy and important period. She should write a research proposal, finish a paper, and present a poster at a congress. Furthermore her paper was chosen for a press conference, that was recorded live.

Nobody took her serious, no one thought that she might be ill. She did recognize some symptoms that could be manifestations of an Addison crisis (weakness, dislike of food). However there was no reason for a crisis: she took all her medicine and had no flu or fever, thus there was no need to raise the cortisol dose.

Before she went on vacation she just wanted to check with her endocrinologist, but the endo was on vacation too and according to the policy of the hospital she had to be referred by her GP. Her GP also had vacation, so she went to the locum. He reserved his lunch time for her, which was really nice.

Because this doctor wasn’t familiar with the disease, he looked it up in a book and decided to determine whether she had orthostatic hypotension (drop in pressure and dizziness when standing up), because this is typical for an Addison crisis (she learned then). She had to lay down and stand up several times. He failed to demonstrate orthostatic hypotension (but she felt it was taking him too long to measure the blood pressure after standing up; she didn’t say anything though).

Then this GP phoned the attending endocrinologist at the hospital. This was one of the endocrinologists who had been in charge of her during the years. Usually she got a new doctor each year.
From the conversation she could infer that this endocrinologist didn’t think there was really much wrong. Afterwards the GP urged her to take her medicine (as if she didn’t take enough) and to take more if necessary. He gave her a form for blood tests, but urged her only to do the tests when it was REALLY REALLY REALLY necessary…..

She felt bad, like a show-off. She excused herself, she was sorry to have bothered him. She never did the blood test, but took some extra cortisol though.

She went on holidays (why would she stay home?), but from there it only went worse. She couldn’t sleep at all. She had gradually lost up to 8-10 kilos in 2-3 months time (about 15% of her body weight). She was dizzy and nauseous and regularly had migraine .

Back home she went to her own GP. He didn’t examine her, but sighed: “This diseases is too complicated. I think you better see your endocrinologist….”

So she phoned her (own) endocrinologist and she was invited to come after the regular consultations. The doctor did a physical exam and noticed orthostatic hypotension. Blood tests were done, which revealed a low blood sodium (125), not as dramatically low as during her first crisis (106), but still abnormal (<140). The next days the sodium dropped further and the creatinine got outside the normal range, so the endo proposed to hospitalize her, saying: “this is not an emergency, but i don’t trust it, because this is not like you. It is not like you at all. I don’t want to wait for the weekend.”

Her endocrinologist had to convince the internist to make a bed available for admission.

During the intake, the two internists behaved very skeptical. Even though the lab results pointed at a too low cortisol level (later confirmed by the lab). One of them kept repeating that a cup of salty soup would pick her up (lack of salt mainly plays a role in patients with primary Addison’s disease, who also lack aldosterone). He would even say that after she recovered by her cortisol infusion. The recovery was very quick. The other internists said that it was a miraculous metamorphosis.

Well that female patient? That was me, six years ago.

And all doctors were males except the doctor who finally hospitalized me.

Yes of all doctors I had seen as an Addison patient over the years, she was the only woman. Many of the male practitioners were excellent doctors, but none of them would have hospitalized me because his intuition told him “something was not o.k.” Maybe I’m wrong and it is just by chance that this happened to be a female doctor. But somehow I feel that, on average (!) female doctors listen a little bit more to their heart, and male doctors a little bit more to their brains.
It is only intuition, but then I’m a woman. ;)
My doctor was not interested in a career as the other doctors, she didn’t like the competition, she didn’t like the hierarchy and she didn’t care for a publication in top journals. Her patients came first.
She has now moved to another (non-academic) hospital and I have a new doctor again. A man, indeed.

——————-

This post is submitted to the upcoming Grand Rounds at Chronic Babe, with the theme Babes:
Your post might be about what it’s like to have women patients. Or to be a woman patient, or a woman who’s a health care provider. It could be about trends in health care for women, or how awesome women are, or how annoying they are. It could be about a particular patient who was very ladylike, or someone who totally wasn’t. It’s your choice. Whatever you send, just please make sure it’s related to the Babes in some way, or else I won’t be including you. This is Grand Rounds, ChronicBabe-style, so it’s Ladies Choice!





Health Care Reform 2010- Obama, USA, Bill, Dutch, Plan, Doctors, Letterman, Pills, $ & other Random Thoughts

30 03 2010

“I do believe the only way we can end all preventable deaths and the suffering of millions is to provide decent health care to all.”
Hilary Benn, 2006
———————

The next Grand Rounds will be hosted by Evan Falchuk at SEE FIRST (Insights into the Uncertain World of Healthcare).  Evan’s theme is Health Care Reform.

How will it affect your life, your medical practice, your experience as a patient, as an insured, an employer, an employee, someone without insurance?  What are your reactions to the politics, and what do you think will happen next?  I’m asking for your candid views on health care reform seen from whatever perspective you bring.  Medicine, politics, business, humor, left, right, center, up, down, you name it.

Health Care Reform has been a theme more than once in this Grand Rounds, i.e. February 10th at the Health Care Blog, and at Obama’s inauguration day (Ten Suggestions For Healthcare Reform) by Val Jones, MD.

The question is which health care reform? Because after all, this is an international Grand Round with bloggers from the US, Europe, Africa, Australia & Asia.
Probably, just as Google.nl (Dutch) already suggests the theme is meant to be about the USA health care bill of Obama, the future plan, and its costs (see Google Fig).

Since I’m from the Netherlands my non-US readers probably need an introduction first:

Recently  the Patient Protection and Affordable Care Act (known as the “Senate bill”) became law on March 23, 2010 and was shortly thereafter amended by the Health Care and Education Reconciliation Act of 2010 and passed by both houses on March 25 without any support from republicans (source: Wikipedia).  Please see Reuters and CNN for an overview of the March 2010 reforms and the year in which they take effect  and the New York Times [1] for the effect per types of household (i.e. Fig. at the right)

The legislation will tighten regulation of insurance companies and is expected to extend medical coverage to more than 30 million uninsured Americans. As explained by Barack Obama in the CNN-video [2] below, it will take 4 years to implement fully may of these reforms, but some desperately needed reforms will take effect right away.  For instance, having a child with a pre-existing medical condition will no longer be the basis for denial of coverage or higher premiums in the old system.


more about “Health Care:What happens when”, posted with vodpod

As a Dutch citizen, I simply can’t imagine that an insurance would be refused because my girl has asthma and I would to have pay a lot more because I happen to have a chronic disease. I can’t imagine that so many people (from a rich country) are uninsured.

As of January 2006 Our Dutch Health Care has been reformed as well. (Officially) there is no longer a fragmented system with compulsory social insurance for the majority and private health care insurance for people with a higher income. Now there is a standard insurance for all, where the insurers have to accept all patients, with no difference in premium, and no surcharges. Children up to the age of 18 years are insured for free.
Both employer and  government will contribute to the Health Insurance fund, and the insured will pay a nominal premium for their standard insurance directly to the health insurer. People with a low income can apply for a care allowance.
To avoid that health insurers seek to avoid less healthy clients, insurers are entitled to compensation for expensive customers. Although not as ideal as conveyed by the Dutch Government in their commercial-like video [3] (a too central role for the insurers, considerably less covered by the basic health insurance) it still is a pretty good and affordable health care system.

more about “MinVWS | The new health care system i…“, posted with vodpod [press T for English translation]

It is often difficult to imagine how things work in another country unless you’ve been there or hear it through somebody else.

A Dutch correspondent in the US, Tom-Jan Meeus wrote a eye-opening article in the Dutch NRC newspaper [4] about the US health care.

When Meeus collected his first prescriptions from a US pharmacy, he had to pay six times as much for the same pills (same brand, logo, packing) as in the Netherlands. And he was even more surprised that the prices were negotiable. But he got used to the US health care system: he gets an expensive check-up each 2 months instead of the once yearly (when needed) doctor visit back in Holland. In this way his doctor safeguards himself against health insurance claims. Furthermore, his doctor “has to keep the pot boiling too”.
This man knows many influential people and has valuable inside information, i.e. about the health status (botox, psychoses) of some of the key players in the health care system. In addition, he was one of the doctors who thwarted Clintons Health Reform: his glory years. This friendly conservative doctor wants freedom of choice, for himself and his patients. When Meeus objects that this freedom of choice becomes a little expensive, the doctor argues that top health care costs a little (US doctors know they are “the best in the world”)  and continues: “do you really think the health care becomes any cheaper when Obama subsidizes 30 million people to get insured? Hanky Panky, that is what it is.” But he knows a way to circumvent the rules. He cut the ties with two insurance companies that reimburse too little. “Perhaps, we can’t stop Obama, but we can undermine him. Why should we help people when we don’t make money out of it…”.

Hopefully not all the doctors think this way (I’m sure the blogging doctors that I know, don’t), but lets give a moments thought to two statements: That the US Healthcare is “the best” (as it is) and that the new health care system costs too much.

We first have to find out whether the money was well spend before the health care renewal.

I’ve shown the figures before (see [5] and [6]), but here are some other representations.

1. According to the Organization for Economic Cooperation and Development (OECD), the US spent 15.3 percent of its GDP on health care in 2006 and this number is rising. As you can see this is far more than the other countries spend.

This trend was already visible in the early eighties: the last 10-20 years the US spend far more money on health care than other rich countries..


And although the U.S. Medicare coverage of prescription drugs began in 2006, most patented prescription drugs are more costly in the U.S. than in most other countries. Factors involved are the absence of government price controls (Wikipedia).

Perhaps, surprisingly, the higher health expenditure hasn’t lead o a higher life expectancy. (78 years in the US versus 82 years in Japan in 2007). The differences are huge if one plots health spending per capita against life expectancy at birth.

Just like the international comparison, higher health care expenditures in different parts of America don’t result in a better health care for all this extra spending. Miami spends 3 times as much money per person health care than Salem (Oregon). Many doctors in Miami, for instance, perform a bunch of tests, like ECG’s, after chest complaints, because they have the necessary devices, not because all these tests have proven useful. Despite all expensive tests and treatments, Miami (and comparable great spenders)  has the worst death rate following a heart attack.* [ source, video in ref 5 and the Organisation for Economic Co-operation and Development's Health Data 2009 site.]

And this is how the US health care works:  simply more treatments and tests are available, but the incentives are wrong: physicians are paid for the quantity of care not the quality.

Just like the doctor of Tom-Jan Meeus, who did a two-monthly unnecessary check-up.

Or as the internist Lisa Bernstein suggests in the New York Times [7]:

For instance, if an asymptomatic, otherwise healthy, patient comes to me wanting a whole-body CT scan to make sure they do not have something bad hiding inside of them, I would decline and educate him or her that there is no data to show that this test has any significant benefit to offset the potential radiation or other harm and the major medical societies do not recommend this test.”

Mind you this is the situation before the current health care reform.

But there is another thing not yet addressed: the expectations of the US-citizens. Americans (and more and more Europeans too) want those check-ups and screenings, because it gives them a (false) feeling of security and because they feel they have the right. That is why it is so difficult for people to give up unnecessary CT-scans, PSA-screening and mammograms.

One reason why Americans have a higher risk for certain diseases (diabetes, overweight, cardiovascular diseases) might be their lifestyle. And lifestyle is something you can change to a certain extent and can have great effects on your health. Lifestyle is also something you can learn. You can learn to enjoy good food, you can avoid the 3 times daily coca cola  and it can be fun to do some exercise or for children to play outside. But still some people rather have a pill to stay healthy or  undergo all kind of (poor performing) tests to see how they’re doing.

Am I exaggerating?

No. This is reality. A few days ago. I saw Letterman in his show [8] telling Jamie Oliver (on his crusade to change the US diet habits) that “he believed diet pills were the only successful way to lose weight in the U.S. and that he expected humans to ‘evolve to the point where 1,000 years from now we all weigh 500-600lbs and it will be OK’ and that “If you would go to doctor they would be happy to give you as many pills as you need and you weight 80 pounds”

Do I fail to see Lettermans warped sense of humor?

Does he really belief this? And, more important, does the majority of Americans believe this?

For here is much to gain, both in health and health care costs.

* As far as I can tell these are only associations; other possible reasons are not taken into consideration: busy live in a metropolis or the population composition might also play a role.

Main References (all accessed 29 March 2010)

  1. NY-Times (2010/03/24) How Different Types of People Will Be Affected by the Health Care Overhaul.
  2. CNN.com (2010/03/23) Health care timeline (including video)
  3. Ministerie van VWS: The new health care system in the Netherlands
  4. NRC (2010/03/20) Tom-Jan Meeus: Mijn dokter won ook van Clinton (Dutch; subscription required).
  5. Laika’s MedLibLog (2009/09/10) Visualization of  paradoxes behind US Health Care.
  6. Laika’s MedLibLog (2009/09/25) Friday Foolery [4]: Maps & Mapping.
  7. NY Times.com (2010/03/27) health/27patient.html?src=twt&twt=nytimeshealth.
  8. The dail Mail UK (Last updated 210-03-25). Simon Cable. Don’t cry Jamie! Now David Letterman lectures Oliver and says his healthy eating crusade won’t work in America

Photo Credits

This map shows the ability of the health service of each territory to provide good basic health care to a number of people. The health service quality score for 1997 was applied to the population. The world average score for health service quality was 72 out of 100. This means that the equivalent of 4.5 billion people had access to good basic health care.The populations with the poorest health care provision live in Sierra Leone and the Central African Republic. The Sierra Leonean health system scored 36 out of 100 – that is half the world average score. Note that only the most basic care is measured here.
“I do believe the only way we can end all preventable deaths and the suffering of millions is to provide decent health care to all.” Hilary Benn, 2006 Territory size shows the proportion of people worldwide who receive good basic health care that live there.




Engage with Grace (Blog Rally)

24 11 2009

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here

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Role of Consumer Networks in Evidence Based Health Information

11 11 2009

Guest author: Janet Wale
member of the Cochrane Consumer Network

People are still struggling with evidence or modern medicine – clinicians, patients, health consumers, carers and the public alike. Part of this is because we always thought medicine was based on quality research, or evidence. It is not only that. For evidence to be used most effectively in healthcare systems researchers, clinicians and ‘the existing or potential patients and carers’ have to communicate and resonate with each other – to share knowledge and responsibilities both in developing the evidence and in individual decision making. On the broader population level, this may include consultation but is best achieved by developing partnerships.

The Cochrane Collaboration develops a large number of the published systematic reviews of best evidence on healthcare interventions, available electronically on The Cochrane Library. Systematic reviews are integral to the collation of evidence to inform clinical practice guidelines. They are also an integral part of health technology assessments, where the cost-effectiveness of healthcare interventions is determined for a particular health system.

With the availability of the Internet we are able to readily share information. We are also acutely aware of disadvantage for many of the World’s populations. What this has meant is pooled efforts. Now we have not only the World Health Organization but also The Cochrane Collaboration, Guidelines International Network, and Health Technology Assessment International. What is common among these organizations? They involve the users of health care, including patients, consumers and carers. The latter three organizations have a formal consumer/patient and citizen group that informs their work. In this way we work to make the evidence relevant, accessible and being used. We all have to be discerning whatever knowledge we are given and apply it to ourselves.

This is  a short post on request.
It also appeared as a comment at:
http://e-patients.net/archives/2009/11/tell-the-fda-the-whole-story-please.html

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NLM’s PillBox, a new pill identification system

3 10 2009

2-10-2009 8-42-20 pillbox beta logoThe National Library of Medicine (NLM) not only launched a redesigned PubMed interface, but also another service (though still in beta): Pillbox beta for “rapid identification and reliable information.
The web address is http://pillbox.nlm.nih.gov/

Pillbox was developed to aid in the identification of unknown solid dosage pharmaceuticals. The system combines high-resolution images of tablets and capsules with FDA-approved appearance information (imprint, shape, color, size and scoring) to enable users to visually search for and identify an unknown solid dosage pharmaceutical. (see About-section).

This system is designed for use by emergency physicians, first responders, other health care providers, Poison Control Center staff, and concerned citizens.
David Hale from the National Library of Medicine (NLM), argued in his short presentation at the Medicine 2.0 congress that better medication identification can potentially prevent 6000 to 8000 deaths each year due to adverse events. David explained that while FDA data might be available in the public domain, there is a need to make the information more usable.

The interface is very clear and intuitive. You can choose the visual identification/exploration or the HTML screen reader compatible option to search.

2-10-2009 8-50-40 Pillbox identify an unknown pillBelow I did a quick search with the latter option. (To show you the search options) I searched for 9mm white pills with the imprint West-ward 254, that can be broken in two and I get one result: a hydrocortisone pill (HC). That is neat. Only the imprint would have done, I guess, but without imprint there remain a lot of white pills to choose from.

2-10-2009 23-25-00 HC west-ward tot

The visual identification option is even easier to use.

As of September 2009 only 779 of the  5,693 records have images, but as the project of the NLM and FDA proceeds in making large-scale photos of prescription medications, verified by manufacturers, more images will be available.

Once a solid dosage form has been identified, additional information is provided, including brand/generic name, ingredients, and the National Drug File identification number. Links are provided to NLM drug information resources, such as FDA-approved label information (DailyMed) and the Drug Information Portal, which searches all NLM drug information resources (About).

2-10-2009 23-19-52 HC pillsThe pills are sometimes difficult to discern. Perhaps because of my screen, and/or because white pills (on a black background) all look alike. The Figure left is 50% of the original (enlarged) picture: it is barely recognizable. So, at least in case of white pills, you do depend on correctly identified imprints.

Furthermore pillbox will not be suitable to identify “illicit drugs”, foreign drugs and pharmacy compounded dosage forms which are not in FDA databases.” For this an “open source” Pillbox where everyone can collaborate (globally) to develop a rapid data rich pill identification system would be the solution (David Hale).

It should be stresses that the PillBox is still in beta-phase. Feedback is welcomed at pillbox@mail.nih.gov.

Finally a presentation of David Hale at the US Pharmacopeia’s Annual Scientific Meeting.

and an interview with him during the Medicine 2.0 congress.

Hattip: @eagledawg and @rachel_w :see Tweet) and NLM_SIS (see Tweet)

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The Trouble with Wikipedia as a Source for Medical Information

14 09 2009

This post was chosen as an Editor's Selection for ResearchBlogging.org

Do you ever use Wikipedia? I do and so do many other people. It is for free, easy to use, and covers many subjects.

But do you ever use Wikipedia to look up scientific or medical information? Probably everyone does so once in a while. Dave Munger (Researchblogging) concluded a discussion on Twitter as follows:

Logo of the English Wikipedia
Image via Wikipedia

“Wikipedia’s information quality is better than any encyclopedia, online or off. And, yes, it’s also easy to use”.

Wikipedia is an admirable initiative. It is a large online collaborative, multilingual encyclopedia written by contributors around the world.
But the key question is whether you can rely on Wikipedia as the sole source for medical, scientific or even popular information.

Well, you simply can’t and here are a few examples/findings to substantiate this point.

RANKING AND USE

E-patients

When you search  for diabetes in Google (EN), Wikipedia’s entry about diabetes ranks second, below the American Diabetes Association Home Page. A recent study published in the J Am Med Inform Assoc [1] confirms what you would expect: that the English Wikipedia is a prominent source of online health information. Wikipedia ranked among the first ten results in more than 70% of search engines and health-keywords tested, and outranked other sources in case of rare disease-related keywords. Wikipedia’s articles were viewed more frequently than the corresponding MedlinePlus Topic pages. This corroborates another study that can be downloaded from the internet here [10]. This study by Envision Solutions, LLC, licensed under the Creative Commons License, concluded that the exposure of Internet user’s to health-related user-generated media (UGM) is significant, Wikipedia being the most reference resource on Google and Yahoo.

The following (also from envisionsolutionsnow.com, from 2007 [10]) illustrates the impact of this finding:

According to the Pew Internet & American Life Project*, 10 million US adults search online for information on health each day [1]. Most (66%) begin their research on a search engine like Yahoo or Google. In addition, Americans are saying that the information they find on the Internet is having an impact. According to Pew, “53% of health seekers report that their most recent health information session [influenced] how they take care of themselves or care for someone else.” In addition, 56% say the information they find online has boosted their confidence in their healthcare decision-making abilities.

And according to an update from the Pew Internet & American Life Project (2009) [11]:

In 2000, 46% of American adults had access to the internet, 5% of U.S. households had broadband connections, and 25% of American adults looked online for health information. Now, 74% of American adults go online, 57% of American households have broadband connections, and 61% of adults look online for health information.

Thus a lot of people look online for health care questions and are more inclined to use highly ranked sources.
This is not unique for Health topics but is a general phenomenon, i.e. see this mini-study performed by a curious individual: 96.6% of Wikipedia Pages Rank in Google’s Top 10 [12]. The extreme high traffic to Wikipedia due to search referrals has  even been been denounced by SEO-people (see here) [13]: if you type “holiday” Wikipedia provides little value when ranking in the top 10: everybody knows what a holiday is ;)

Medical students use it too.

A nightmare for most educators in the curriculum is that students rely on UGM or Web 2.0 sites as a source  of medical information. Just walk along medical students as they work behind their computers and take a quick glance at the pages they are consulting. These webpages often belong to the above category.

AnneMarie Cunningham, GP and Clinical Lecturer in the UK, did a little informal “survey” on the subject. She asked 31 first year medical students about their early clinical attachments in primary and secondary care and summerized the results on her blog Wishful Thinking in Medical Education [14]. By far and away Wikipedia was the most common choice to look up unfamiliar clinical topics.

AnneMarie:

‘Many students said I know I shouldn’t but….’ and then qualified that they used Wikipedia first because it was easy to understand, they felt it was reasonably reliable, and accessible. One student used it to search directly from her phone when on placement..

50% of the doctors use it!

But these are only medical students. Practicing doctors won’t use Wikipedia to solve their clinical questions, because they know where to find reliable medical information.

Wrong!

The New Scientist cites a report [15] of US healthcare consultancy Manhattan Research (April 2009), stating that that 50 percent of the doctors turn to Wikipedia for medical information.

A recent qualitative study published in Int J Med Inform [2] examined the “Web 2.0″ use by 35 junior physicians in the UK. Diaries and interviews encompassing 177 days of internet use or 444 search incidents, analyzed via thematic analysis. Although concepts are loosely defined (Web 2.0, internet and UMG are not properly defined, i.e. Google is seen as a web 2.0 tool (!) [see Annemarie's critical review [16] the results clearly show that 89% of these young physicians use at least one “Web 2.0 tool” (including Google!) in their medical practice, with 80% (28/35) reporting the use of wikis. The visit of wiki’s is largely accounted for by visits to Wikipedia: this was the second most commonly visited site, used in 26% (115/44) of cases and by 70% (25/35) of all physicians. Notably, only one respondent made regular contribution to a medical wiki site.

The main motivation for using the Internet for information seeking was the accessibility and ease of use over other tools (like textbooks), the uptodateness, the broad coverage and the extras such as interactive immages. On the other hand most clinicians realized that there was a limitation in the quality or usefulness of information found. It is reassuring that most doctors used UGM like Wikipedia for background or open questions, to fulfill the need for more in depth knowledge on a subject, or to find information for patients, not for immediate solving of clinical questions.

The Int J Med Inform article has been widely covered by blogs: i.e. see Wishful Thinking in Medical Education [16], Dr Shock, MD, PhD [17], Life in the Fast Lane [18], Clinical Cases and Images Blog [19] and Scienceroll [20].

Apparently some doctors also heavily rely on Wikipedia that they refer to Wikipedia articles in publications (see the Int. J Cardiol. PubMed [3] abstract below)!!

8-9-2009 14-03-15 Int J cardiol wikipedia references 2

WHY WIKIPEDIA IS NOT (YET) A TRUSTWORTHY AND HIGH QUALITY HEALTH SITE

Whether the common use of Wikipedia by e-patient, medical students and doctors is disadvantageous depends on the quality and the trustworthiness of the Wikipedia articles, and that is in its turn dependent on who writes the articles.

Basically, the strength of Wikipedia is it weakness: anyone can write anything on any subject, and anyone can edit it, anonymously.

Negative aspects include its coverage (choice of subjects but also the depth of coverage), the “overlinking”, the sometimes frustating interactions between authors and editors, regularly leading to (often polite) “revision wars“, but above all the lack of ‘expert’ authors or peer review. This may result in incomplete, wrong or distorted information.

Positive aspects are its accessibility, currency, availability in many languages, and the collective “authorship” (which is an admirable concept).

The following humorist video shows how the wisdom of the crowds can lead to chaos, incorrect and variable information.

SCOPE AND ACCURACY (What has been covered, how deep and how good) :

Too much, too little, too ….

With respect to its coverage one study in the Journal of Computer-Mediated Communication (2008) [4] concludes:

Differences in the interests and attention of Wikipedia’s editors mean that some areas, in the traditional sciences, for example, are better covered than others. (…)
Overall, we found that the degree to which Wikipedia is lacking depends heavily on one’s perspective. Even in the least covered areas, because of its sheer size, Wikipedia does well, but since a collection that is meant to represent general knowledge is likely to be judged by the areas in which it is weakest, it is important to identify these areas and determine why they are not more fully elaborated. It cannot be a coincidence that two areas that are particularly lacking on Wikipedia—law and medicine—are also the purview of licensed experts.

It is not unexpected though that Wikipedia’s topical coverage is driven by the interests of its users.

Sometimes data are added to Wikipedia, that are in itself correct, but controversial. Recently, Wikipedia published the 10 inkblots (Scienceroll, [21]) of the Rorschach test, along with common responses for each. This had led to complaints by Psychologists , who argue that the site is jeopardizing one of the oldest continuously used psychological assessment tests (NY Times [22]).

The actual coverage of medical subjects may vary greatly. In one study [5], abstract-format, 2007) Wikipedia entries were screened for the most commonly performed inpatient surgical procedures in the U.S. Of the 39 procedures, 35 were indexed on Wikipedia. 85.7% of these articles were deemed appropriate for patients. All 35 articles presented accurate content, although only 62.9% (n=22) were free of critical omissions. Risks of the procedures were significantly underreported. There was a correlation between an entry’s quality and how often it was edited.

Wikipedia may even be less suitable for drug information questions, questions that one-third of all Internet health-seekers search for. A study in Annals of Pharmacotherapy [6] comparing the scope, completeness, and accuracy of drug information in Wikipedia to a free, online, traditionally edited database (Medscape Drug Reference [MDR]) showed that  Wikipedia answered significantly fewer drug information questions (40.0%) compared with MDR (82.5%; p < 0.001) and that Wikipedia answers were less complete. Although no factual errors were found, errors of omission were higher in Wikipedia (n = 48) than in MDR (n = 14). The authors did notice a marked improvement in Wikipedia over time. The authors conclude:

This study suggests that Wikipedia may be a useful point of engagement for consumers looking for drug information, but that it should be supplementary to, rather than the sole source of, drug information. This is due, in part, to our findings that Wikipedia has a more narrow scope, is less complete, and has more errors of omission versus the comparator database. Consumers relying on incomplete entries for drug information risk being ill-informed with respect to important safety features such as adverse drug events, contraindications, drug interactions, and use in pregnancy.
These errors of omission may prove to be a substantial and largely hidden danger associated with exclusive use of
user-edited drug information sources.

Alternatively, user-edited sites may serve as an effective means of disseminating drug information and are promising as a means of more actively involving consumers in their own care. However, health professionals should not use user-edited sites as authoritative sources in their clinical practice, nor should they recommend them to patients without knowing the limitations and providing sufficient additional information and counsel…

Not Evidence Based

German researches found [7], not surprisingly, that Wikipedia (as well as two major German statutory health insurances):

“…failed to meet relevant criteria, and key information such as the presentation of probabilities of success on patient-relevant outcomes, probabilities of unwanted effects, and unbiased risk communication was missing. On average items related to the objectives of interventions, the natural course of disease and treatment options were only rated as “partially fulfilled”. (..)  In addition, the Wikipedia information tended to achieve lower comprehensibility. In conclusion(..) Wikipedia (..) does not meet important criteria of evidence-based patient and consumer information though…”

Wrong, misleading, inaccurate

All above studies point at the incompleteness of Wikipedia. Even more serious is the fact that some of the Wikipedia addings are wrong or misleading. Sometimes on purpose. The 15 biggest wikipedia blunders [23] include the death announcements of Ted Kennedy (when he was still alive),  Robert Byrd and others. Almost hilarious are the real time Wikipedia revisions after the presumed death of Kennedy and the death of Ken Lay (suicide, murde, heart attack? [24).

In the field of medicine, several drug companies have been caught altering Wikipedia entries. The first drug company messing with Wikipedia was AstraZeneca. References claiming that Seroquel allegedly made teenagers “more likely to think about harming or killing themselves” were deleted by a user of a computer registered to the drug company [25], according to Times [26]. Employees of Abbott Laboratories have also been altering entries to Wikipedia to “eliminate information questioning the safety of its top-selling drugs.”(See WSJ-blog [27] , brandweeknrx.com [28], and recently Kevin MD[29])

These are “straightforward” examples of fraudulent material. But sometimes the Wikipedia articles are more subtly colored by positive or negative bias.

Take for instance the English entry on Evidence Based Medicine (in fact the reason why I started this post). Totally open-minded I checked the entry, which was automatically generated in one of my posts by Zemanta. First I was surprised by the definition of EBM:

Evidence-based medicine (EBM) aims to apply the best available evidence gained from the scientific method to medical decision making. It seeks to assess the quality of evidence of the risks and benefits of treatments (including lack of treatment).

instead of the usually cited Sacket-definition (this is only cited at the end of the paper):

“the practice of evidence based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research”

In short, the whole article lacks cohesion: the definitions of EBM are not correct, there is too much emphasis on not directly relevant information (4 ways to grade the evidence and 3 statistical measures), the limitations are overemphasized (cf. chapter 7 with 6 in the Figure below) and put out of perspective.

Apparently this has also been noted by Wikipedia, because there is a notice on the Evidence Based Medicine Page saying:

This article has been nominated to be checked for its neutrality. Discussion of this nomination can be found on the talk page. (May 2009)

9-9-2009 9-55-04 wikipedia EBM start smal

Much to my surprise the article had been written by Mr-Natural-Health, who’s account seems not to be in use since 2004  and who is currently active as User:John Gohde. Mr Natural Health is a member of WikiProject Alternative medicine.

Now why in earth would some advocate of CAM write the Wikipedia EBM-entry? I can think of 4 (not mutually exclusive) reasons:

  1. When you’re an EBM-nonbeliever or opponent this is THE chance to misinform readers about EBM (to the advantage of CAM).
  2. The author was invited to write this entry.
  3. No EBM-specialist or epidemiologist is willing to write the entry, or to write for Wikipedia in general (perhaps because they find Wikipedia lacks trustworthiness?)
  4. EBM specialists/epidemiologists are not “allowed”/hindered to make major amendments to the text, let alone rewrite it.

According to Mr Naturopath point 2 is THE reason he wrote this article. Now the next question is “exactly by whom was he invited?” But the TALK-page reveals that Mr Naturapath makes it a tough job for other, better qualified writers, to edit the page (point 4). To see how difficult it is for someone to re-edit a page, please see the TALK-page. In fact, one look at this page discourages me from ever trying to make some amendments to any Wikpedia text.

SOLUTIONS?

Changes to Wikipedia’s organization

Wikipedia has long grasped that its Achilles heel is the free editability (see for instance this interview with Wikipedia’s founder [30]). Therefore, “WikiProjects” was initiated to help coordinate and organize the writing and editing of articles on a certain topic, as well as “Citizendium” which is an English-language wiki-based free encyclopedia project aimed to improve the Wikipedia model by providing a “reliable” encyclopedia. “It hopes to achieve this by requiring all contributors to use their real names, by strictly moderating the project for unprofessional behavior, by providing what it calls “gentle expert oversight” of everyday contributors, and also through its “approved articles,” which have undergone a form of peer-review by credentialed topic experts and are closed to real-time editing.”

Starting this fall Wikipedia will launch an optional feature called “WikiTrust” will color code every word of the encyclopedia based on the reliability of its author and the length of time it has persisted on the page: Text from questionable sources starts out with a bright orange background, while text from trusted authors gets a lighter shade.

9-9-2009 15-25-36 wikipedia wikiproject medicine

The Wikipedia EBM article is within the scope of these two projects, and this is good news. However, Wikipedia still clings to the idea that: “Everyone is welcome to join in this endeavor (regardless of medical qualifications!).” In my opinion, it would be better if Wikipedia gave precedence to experts instead of hobbyists/ people from another field, because the former can be expected to know what they are talking about. It is quite off-putting for experts to contribute. See this shout-out:

Who are these so-called experts who will qualify material? From what I’ve seen so far, being an academic expert in a particular field hardly protects one from edit wars–Julie and 172 are two primary examples of this. Meanwhile, the only qualification I have seen so far is that they have a B.A. Gimme a friggin’ break! (and before I get accused of academic elitism, I make it known that I dropped out of college and spend an inordinate amount of time at work correcting the BS from the BAs, MAs, and PhDs).

While anyone can still edit entries, the site is testing pages that require changes to be approved by an experienced Wikipedia editor before they show up, the so called Flagged protection and patrolled revisions. (see Wikimedia) This proposal is only for articles that are currently under normal mechanisms of protection (i.e. the Obama-article cannot be edited by a newcomer).

Although this seems logic, it is questionable whether “experienced” editors are per definition better qualified than newcomers. A recent interesting analysis of the Augmented Social Cognition group [31], (cited in the Guardian [32]) shows a slowdown in growth of Wikipedia activity, with the activity slightly declining in all classes of editors except for the highest-frequency class of editors (1000+ edits). Here is an increase in their monthly edits.

In addition the study shows growing resistance from the Wikipedia community to new content. The total percentage of reverted edits increased steadily over the years, but more interestingly, low-frequency or occasional editors experienced a visibly greater resistance compared to high-frequency editors . Together this points at a growing resistance from the Wikipedia community to new content, especially when the edits come from occasional editors.

This is more or less in line with an earlier finding [9] showing that Wikipedia members feel more comfortable expressing themselves on the net than off-line and scored lower on agreeableness and openness compared to non-Wikipedians, a finding that was interpreted as consistent with the possibility that contributing to Wikipedia serves mainly egocentric motives.

Image representing Medpedia as depicted in Cru...
Image via CrunchBase

Encouraging students, doctors and scientists (provisional)

One way of improving content, is to encourage experts to write. To achieve that the information on Wikipedia is of the highest quality and up-to-date, the NIH is encouraging its scientists and science writers to edit and even initiate Wikipedia articles in their fields [36]. It joined with the Wikimedia Foundation, to host  a training session on the tools and rules of wiki culture, at NIH headquarters in Bethesda.

A less noncommital approach is the demand to “Publish in Wikipedia or perish”, as described in Nature News [9]. Anyone submitting to a section of the journal RNA Biology will, in the future, be required to also submit a Wikipedia page that summarizes the work. The journal will then peer review the page before publishing it in Wikipedia.” The project is described in detail here [10] and the wiki can be viewed here

Wiki’s for experts.

One possible solution is that scientist and medica experts contribute to wiki’s other than the Wikipedia. One such wiki is the wiki-surgery [5]. PubDrugRxWiki , WikiProteins [11] and Gene Wiki [12] are other examples. In general, scientists are more inclined to contribute to these specialists wiki’s, that have oversight and formal contributions by fellow practitioners (this is also true for the RNA-wiki)

A medical Wikipedia

Yet another solution is a medical wikipedia, such as Ganfyd or Medpedia . Ganfyd is written by medical professionals. To qualify to edit or contribute to the main content of Medpedia approved editors must have an M.D., D.O., or Ph.D. in a biomedical field. Others, however, may contribute by writing in suggestions for changes to the site using the “Make a suggestion” link at the top of each page. Suggestions are reviewed by approved editors. Whether these medical wikipedias will succeed will depend on the input of experts and their popularity: to what extent will they be consulted by people with health questions?

I would like to end with a quote from Berci during twitterview (link in Wikipedia):

@Berci : @diariomedico And as Wikipedians say, Wikipedia is the best source to start with in your research, but should never be the last one. #DM1 9 months ago

REFERENCES

ResearchBlogging.orgScientific Articles

  1. Laurent, M., & Vickers, T. (2009). Seeking Health Information Online: Does Wikipedia Matter? Journal of the American Medical Informatics Association, 16 (4), 471-479 DOI: 10.1197/jamia.M3059
  2. Hughes, B., Joshi, I., Lemonde, H., & Wareham, J. (2009). Junior physician’s use of Web 2.0 for information seeking and medical education: A qualitative study International Journal of Medical Informatics, 78 (10), 645-655 DOI: 10.1016/j.ijmedinf.2009.04.008
  3. Lee, C., Teo, C., & Low, A. (2009). Fulminant dengue myocarditis masquerading as acute myocardial infarction International Journal of Cardiology, 136 (3) DOI: 10.1016/j.ijcard.2008.05.023
  4. Halavais, A., & Lackaff, D. (2008). An Analysis of Topical Coverage of Wikipedia Journal of Computer-Mediated Communication, 13 (2), 429-440 DOI: 10.1111/j.1083-6101.2008.00403.x
  5. Devgan, L., Powe, N., Blakey, B., & Makary, M. (2007). Wiki-Surgery? Internal validity of Wikipedia as a medical and surgical reference Journal of the American College of Surgeons, 205 (3) DOI: 10.1016/j.jamcollsurg.2007.06.190
  6. Clauson, K., Polen, H., Boulos, M., & Dzenowagis, J. (2008). Scope, Completeness, and Accuracy of Drug Information in Wikipedia Annals of Pharmacotherapy, 42 (12), 1814-1821 DOI: 10.1345/aph.1L474 (free full text)
  7. Mühlhauser I, & Oser F (2008). [Does WIKIPEDIA provide evidence-based health care information? A content analysis] Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen, 102 (7), 441-8 PMID: 19209572
  8. Amichai–Hamburger, Y., Lamdan, N., Madiel, R., & Hayat, T. (2008). Personality Characteristics of Wikipedia Members CyberPsychology & Behavior, 11 (6), 679-681 DOI: 10.1089/cpb.2007.0225
  9. Butler, D. (2008). Publish in Wikipedia or perish Nature DOI: 10.1038/news.2008.1312
  10. Daub, J., Gardner, P., Tate, J., Ramskold, D., Manske, M., Scott, W., Weinberg, Z., Griffiths-Jones, S., & Bateman, A. (2008). The RNA WikiProject: Community annotation of RNA families RNA, 14 (12), 2462-2464 DOI: 10.1261/rna.1200508
  11. Mons, B., Ashburner, M., Chichester, C., van Mulligen, E., Weeber, M., den Dunnen, J., van Ommen, G., Musen, M., Cockerill, M., Hermjakob, H., Mons, A., Packer, A., Pacheco, R., Lewis, S., Berkeley, A., Melton, W., Barris, N., Wales, J., Meijssen, G., Moeller, E., Roes, P., Borner, K., & Bairoch, A. (2008). Calling on a million minds for community annotation in WikiProteins Genome Biology, 9 (5) DOI: 10.1186/gb-2008-9-5-r89
  12. Huss, J., Orozco, C., Goodale, J., Wu, C., Batalov, S., Vickers, T., Valafar, F., & Su, A. (2008). A Gene Wiki for Community Annotation of Gene Function PLoS Biology, 6 (7) DOI: 10.1371/journal.pbio.0060175
    Other Publications, blogposts
    (numbers in text need to be adapted)

  13. Envision Solutions, LLC. Diving Deeper Into Online Health Search – Examining Why People Trust Internet Content & The Impact Of User-Generated Media (2007) http://www.envisionsolutionsnow.com/pdf/Studies/Online_Health_Search.pdf Accessed August 2009 (CC)
  14. New data available of the the Pew Internet & American Life Project are available here)
  15. http://www.thegooglecache.com/white-hat-seo/966-of-wikipedia-pages-rank-in-googles-top-10/
  16. http://www.seoptimise.com/blog/2008/05/why-wikipedias-google-rankings-are-a-joke.html
  17. http://wishfulthinkinginmedicaleducation.blogspot.com/2009/06/where-do-first-year-medical-students.html
  18. http://www.newscientist.com/article/mg20327185.500-should-you-trust-health-advice-from-the-web.html?page=1
  19. http://wishfulthinkinginmedicaleducation.blogspot.com/2009/07/where-do-junior-doctors-look-things-up.html
  20. http://www.shockmd.com/2009/07/06/how-and-why-junior-physicians-use-web-20/
  21. http://sandnsurf.medbrains.net/2009/07/how-and-why-junior-docs-use-web-20/
  22. Wikipedia used by 70% of junior physicians, dominates search results for health queries (casesblog.blogspot.com)
  23. http://scienceroll.com/2009/07/06/junior-physicians-and-web-2-0-call-for-action/
  24. http://scienceroll.com/2009/08/03/rorschach-test-scandal-on-wikipedia-poll/
  25. http://www.nytimes.com/2009/07/29/technology/internet/29inkblot.html (Rorschach)
  26. http://www.pcworld.com/article/170874/the_15_biggest_wikipedia_blunders.html
  27. http://www.futureofthebook.org/blog/archives/2006/07/reuters_notices_wikipedia_revi.html
  28. http://en.wikipedia.org/w/index.php?diff=prev&oldid=144007397
  29. http://business.timesonline.co.uk/tol/business/industry_sectors/media/article2264150.ece
  30. http://blogs.wsj.com/health/2007/08/30/abbott-labs-in-house-wikipedia-editor/
  31. http://www.brandweeknrx.com/2007/08/abbott-caught-a.html
  32. http://www.kevinmd.com/blog/2009/08/op-ed-wikipedia-isnt-really-the-patients-friend.html
  33. http://www.businessweek.com/technology/content/dec2005/tc20051214_441708.htm?campaign_id=topStories_ssi_5
  34. http://asc-parc.blogspot.com/2009/08/part-2-more-details-of-changing-editor.html
  35. http://www.guardian.co.uk/technology/2009/aug/12/wikipedia-deletionist-inclusionist
  36. http://www.washingtonpost.com/wp-dyn/content/article/2009/07/27/AR2009072701912.html
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