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)










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