davidrothman.net

Holy cow! Holy pig!

Watching misinformation spread is sort of entertaining. Check out all the people who talk about not eating pork on Twitter. (The flu is not spread by eating pork.)

Hah! As I was writing this post, the latest xkcd appeared!

The CDC’s Emergency Preparedness and Response Twitter feed seems to be a frequently-updated source of sanity:

RSS Feed for CDC’s Swine Flu site

Maps
Google Map 1 (H1N1 Swine Flu)
Google Map 2 (”Swine Flu 2009″)
Google Map 3 (”HPAI H5N1 30-Day Outbreak Map”)

HealthMap (previously mentioned here) might be the most complete map visualization. HealthMap’s twitter feed is also interesting, but gives a more panicked impression than that of the CDC (see above)

April 27th, 2009 | Category: Consumer Health Info, For Medical Libraryfolk, Technology | Comments (4)

The idea behind rateadrug.com is for users to rate drugs.

Our goal is to provide unique user-generated data on side effects and subtle side effects of medications. We want to know how these prescription drugs make you feel.

I’ve seen stupid applications of social media in healthcare, but this may take the cake as the dumbest I’ve seen in a good while.

April 25th, 2009 | Category: "Social Software", Consumer Health Info, For Medical Libraryfolk, Technology | Comments (15)

Dated 2007 but new to me:

Havidol is clearly an amazing new drug. Thank goodness there’s such a wonderfully detailed site to tell us all about Havidol and how it can treat Dysphoric Social Attention Consumption Deficit Anxiety Disorder (DSACDAD).

Click to visit the site

Great parody of direct-to-consumer advertising.

February 8th, 2009 | Category: Consumer Health Info, For Medical Libraryfolk, Fun | Comments Off

New to me- and a good idea to put all of this on one page.

http://www.cdc.gov/socialmedia/

I didn’t know the CDC was on MySpace or that the FDA had a recall Twitter feed.

I decided I should definitely follow the CDC’s Twitter feed for Health Professionals, which is for “…Health Professionals interested in staying up-to-date with CDC’s interactive media activities…”

They’ve also got a widget to help consumers search for products impacted by the Peanut-Containing Product Recall (embedded below).

Includes:

• Blogs
• eMail Subscriptions
• Health-e-Cards
• Mobile Information
• Online Video
• Phone/Email
• Podcasts
• RSS Feeds
• Social Networks
• Badges for Social Networks
• Twitter
• Virtual Worlds
• Web Sites
• Widgets

Go check it out.

Hat tip: Maura Sostack

February 5th, 2009 | Category: "Social Software", Blogging, Consumer Health Info, For Medical Libraryfolk, Online Social Networks, Podcasting, RSS/Feeds, Technology | Comments (6)

Francesca Frati (who rules) pointed out last week a site produced by the Royal College of Physicians of Edinburgh and Royal College of Physicians and Surgeons of Glasgow: http://behindthemedicalheadlines.com/.

Craig Stoltz (previously mentioned) dropped me an email to point out a post I’d missed from The Health Care Blog by Alicia White of Bazian (the company which evaluates stories for the NHS’s Behind the Headlines service).

Says Ms. White:

…we’ve developed the following questions to help you figure out which articles you’re going to believe, and which you’re not.

Questions include:

• Does the article support its claims with scientific research?
• Is the article based on a conference abstract?
• Was the research in humans?
• How many people did the research study include?
• Did the study have a control group?
• Who paid for and conducted the study?
• Did the study actually assess what’s in the headline?
• How can I find out more?

Good stuff. Go read it.

Thanks again for the pointers, Francesca and Craig!

February 3rd, 2009 | Category: Consumer Health Info, For Medical Libraryfolk, Information Literacy | Comments (3)

(Example of how backed-up I am: WordPress says I started drafting this post on 9/18/08)

I was skeptical when I first heard about Health News Review…but learning that Craig Stoltz was involved with the project¹ made me give it a close look.

HealthNewsReview.org is published by Gary Schwitzer of the University of Minnesota’s health journalism program and funded by the Foundation for Informed Medical Decision Making.

Read a few reviews and you’ll likely find them reliable and wonderfully critical. Be sure to check how how they rate stories.

Health News Review focuses on U.S. news, so anglophones in other nations will want to note these:

For Canadian news, there’s Media Doctor Canada.

Australians have Media Doctor Australia.

The NHS Choices site has a section called Behind the Headlines which seems to serve a similar purpose for U.K. health news.

Your turn: Are there other sites like these that I missed?

January 26th, 2009 | Category: Consumer Health Info, For Medical Libraryfolk, Technology | Comments (5)

I know I’m way behind on such things, but this article from the Annals of Pharmacotherapy deserves a mention, even one this belated:

Scope, completeness, and accuracy of drug information in Wikipedia.
Ann Pharmacother. 2008 Dec;42(12):1814-21. Epub 2008 Nov 18.
[PubMed] | [html] | [PDF]

The article compares drug information in Wikipedia to drug information in the Medscape drug reference.

“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.”

And I loved this:

“…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. If these sites are recommended, it should be in the form of a permanent link pointing to the specific recommended version of an entry. Finally, the issues raised in Web 2.0 are not novel, nor are the approaches; consumer education, watchful editors, alert health professionals, and ethical online behavior remain, as ever, the foundation for the safety of Internet health information.”

January 22nd, 2009 | Category: "Social Software", Consumer Health Info, For Medical Libraryfolk, RSS/Feeds, Wikis | Comments (4)

A recent article in the Journal of Rheumatology:

“Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?” [html] | [PDF]

Short answer:

Hell, no.

Longer answer:

Says the article:

“The natural assumption is to believe that there exists a link between the quality of information on the Internet and harm. However, a systematic review attempting to evaluate the number and characteristics of reported cases of harm in the peer-review literature determined that for a variety of reasons, there was little evidence to support this notion.”

It is impossible to quantify why people make bad decisions. For instance, say someone makes foolish financial decisions and loses everything they own: can it be determined if these bad decisions were made based on information they found online?

On the other hand, ask anyone you know who works in an Emergency Room if they’ve seen people who have done harm to themselves with a self-diagnosis or self-treatment based on something they read online. Every one of them will confirm they have. This isn’t necessarily the fault of the information found online, but knowing as we do that people increasingly make decisions about their health that are informed by information they find online, we don’t need evidence to assume, a priori and with confidence, that bad information can lead to harm. It is common sense for everyone in the health community to promote/produce good online information resources and discourage the existence/use of bad online information resources. Most importantly, we must help both health professionals and patients gain the information and health literacy skills to tell the good from the bad.

Authors Deshpande and Jadad argue that the evaluation tools for Web sites suffer…

“…from several limitations, which, in addition to those mentioned by the authors, include uncertain levels of usability, reliability, and validity.”

I won’t argue with that. I don’t think any single evaluation tool can let someone without information literacy skills determine the quality of information found online. I don’t think that even a vast arsenal of such evaluation tools will do the trick.

The authors have questions I’ll answer (I don’t care that the questions were intended to be rhetorical- they need to be answered):

“Will we ever develop an ideal tool that allows individuals to assess the quality of health information?”

Nope. We’ll also never invent a diagnostic tool that can replace a good physician’s experience and judgement- but that doesn’t mean we shouldn’t create tools that help new doctors build these skills or help more experienced doctors flesh out their differential.

What are the determinants of this quality?

That’s a pretty broad question, but the MLA has a good basic guide of where to start.

“Is it possible to assess or measure quality?”

Medical librarians assess the quality of information every single day. So…yeah, it is.

“Even if possible, is the formal assessment of quality even necessary?”

Necessity depends on who the user is and what his/her particular information needs are.

“Does it even matter?”

Kind, encouraging teachers throughout the world often say that there’s no such thing as a stupid question. These extraordinarily compassionate educators are lying. Yes, it matters.

I’m a Web enthusiast who sees a lot of value in lots of online collaborative efforts. There are absolutely places and uses for the wisdom of the crowd- but to hear some people talk about apomediation, you’d think the wisdom of the crowd could replace the judgement of experts.

“For example, Internet users could provide ratings or recommendations based on their own experiences to judge the quality and relevance of health information.”

Huh. So if we’re just gonna’ go with what a crowd of self-selecting amateurs agree upon, I guess we don’t need double blind trials any more, either? We’ll just ask a crowd their opinion. Who needs empiricism? Science, schmience. Why should we take this article more seriously because the authors have two MDs and dotorate between them? I’m not Andrew Keen¹, but neither am I an irrational technotopian.

“Analogous to the peer-review process, aggregation of ratings from many individuals (a form of crowdsourcing) allows “good” information to be highlighted prominently, while “not so good” information gets pushed to the bottom.”

That’s a terrible analogy. In the peer-review process, both the author(s) and the reviewer(s) are credentialed experts in their field. I would not ask a room full of neurologists for advice on my house’s plumbing and I would not ask a room full of plumbers about the treatment of peripheral neuropathy. For the “Digg” model to work at all for health information, the crowd should be very large and very knowledgeable. On the other hand, even widely agreed-upon practices have later been proven wrong by empirical testing and evidence…so shouldn’t we rely on evidence?

The problem with relying only on the wisdom of crowds is that, sometimes, the crowd shows an alarming lack of wisdom regarding health information. Huckster snake-oil salesman Kevin Trudeau’s Natural Cures ‘They’ Don’t Want You to Know About was a New York Times self-help Best Seller! (For more on why this is a great example of an unwise crowd, see this video.)

Let me illustrate with a real life example: When our infant son developed what appeared to be a tremor, we didn’t waste time asking a crowd. We first asked a local pediatric neurologist for his opinion. When he was unable to make a diagnosis, we asked Dr. Marc Patterson, a pediatric neurologist at the Mayo Clinic. Dr. Patterson’s unusual experience and education enabled him to make a diagnosis very quickly.²

I wonder: If Drs. Deshpande and Jadad have family members with worrying illnesses, do they consult the best available clinical expert, or go to the wisdom of the crowd?

But I’m getting off-track. Back to the article.

As seems to be typical for malinformed physician technotopians, these authors point at Wikipedia to support their perspective.

“The interplay of users to collaborate and deal with information overload has already been proven successful in other areas outside the health space. For example, Wikipedia not only allows users to submit content on various topics, but also provides the capability for users to edit the content of others. Although there is the potential for misuse, Wikipedia, which relies on anonymous, unpaid volunteers, seems to be as accurate in covering scientific information as the Encyclopedia Britannica.”

Well, yeah. And I’d trust Wikipedia as a source for health information about as much as I’d trust Britannica….which is to say not very much.³

“Since its inception in 1990 until the present day, the health system has grappled with how to manage potential harm associated with information available on the Internet. Research in this area, for the most part, continues to assume that techniques used to evaluate paper-based information can automatically be applied to online resources, ignoring the added complexity created by the multiple media formats, players, and channels that are brought together by the Internet.”

Someone please explain to me why peer review is less effective with texts distributed online than texts distributed on artifacts of dead trees. Text is text. Someone please explain to me why peer review would be less effective if this text is read aloud and recorded/played online as video or audio (downloadable or streamed in any format). The “added complexity” the authors mention impacts peer review in no way. Perhaps this is why they make such an assertion while providing utterly no support for it.

I like Web technology and have made a nice niche for myself by writing and talking about how it can be useful to health information professionals. I am sick to death, however, of people attempting to make names for themselves with inane prognostication and unsupported technotopianism. When these authors write that “…as the Web continues to evolve, we will likely gain new insights as to how this happens along with a better understanding of how to handle health information from any source…”, I want to beat my head against a wall. To me, this is no different from saying we should go ahead and build lots more nuclear reactors because we have faith that technology will work out a way to dispose of nuclear waste in a safe manner before we are harmed by our inability to dispose of it properly. Such things are too important to take on faith in the future.

“The time has likely come to end our Byzantine discussions about whether and how to measure the quality of online health information. The public has moved on. It is time to join them in what promises to be an exciting voyage of human fellowship, with new discoveries and exciting ways to achieve optimal levels of health.”

Such a perspective would have us ally ourselves with the Jenny McCarthys of the world. Jenny McCarthy believes and popularizes the idea that immunizations cause autism spectrum disorders, despite the fact that there is no scientific evidence correlating immunizations and ASDs.

Laypeople, even brilliant laypeople, do not generally have the information or health literacy skills to know where to find quality information and to know what to trust. My brother is an experienced Web programmer. He has topped out every IQ test he has ever taken. He is a brilliant man and as talented an autodidact as anyone I know. Still, when he needed a medical procedure, he was able to find more information and trust its authority by conferring with me- because I spend my days finding and evaluating health information.

Reliance on science and expertise is not Byzantine. Rationalism is not Byzantine. Empiricism is not Byzantine. Politicians should not make public policy decisions based on polls and clinicians should not make decisions based on the misinformed preferences of their patients. Clinicians have a duty to educate patients and help point them towards good information because the volume of shoddy information is growing at an alarming rate.

January 20th, 2009 | Category: Consumer Health Info, For Medical Libraryfolk, Information Literacy | Comments (9)

Nikki (at Eagle Dawg Blog) nails down exactly why I didn’t bother posting about the latest from Pew.

(Typical of my cynicism- the report wasn’t worth blogging about, but criticism of the report *is*.)

If you’re not reading Nikki’s blog yet, subscribe now:
[Eagle Dawg Blog - Feed].

August 27th, 2008 | Category: Consumer Health Info, For Medical Libraryfolk, Medical Librarianship Blogs | Comments Off

Amidst all the coverage of Medpedia that has generally seemed to be derived from a press release is this more informative article from Pam Dolan at American Medical News.

I’m quoted in the article:

Medical librarian and blogger David Rothman, who regularly writes at DavidRothman.net about medical wikis, expressed concerns about the regular monitoring of Medpedia’s content. “If the academic institutions … wish to avoid embarrassment, I’d recommend that they dedicate some time of their health care experts to regular review of articles,” Rothman wrote.

He estimates about 65 medical wikis exist. He’s not sure what the involvement of prominent medical institutions will mean to the project, noting that comparisons won’t be possible until the site is up and running.

As I usually do when I’m interviewed or quoted, I thought I’d post the entirety of my comments here. Pam got my views partially from this post I wrote about Medpedia and partially from an email. Pam’s questions are bolded:

My question for you is whether or not medpedia will be the largest collaboration of its kind for a medical wiki…

That depends on what you mean by “largest” and what we learn about Medpedia when it comes out of Beta. We haven’t yet seen how many contributors/editors it has or how many articles/words it contains. We won’t know for months after it begins how active a community it has. What other metrics could be used to measure “largeness”? The names of affiliated institutions? Medpedia doesn’t really say exactly what contributions those institutions are making (aside from, apparently, allowing the use of their names and logos).

…and if it will raise the bar for those wanting to develop medical wikis in the future.

I think that remains to be seen. So far, Medpedia looks to the public like a press release and a mock-up. When it is up and running, we can begin to compare it to other efforts. Until then, such comparisons aren’t possible.

August 15th, 2008 | Category: "Social Software", Consumer Health Info, For Medical Libraryfolk, Press, Technology, Wikis | Comments Off

Interesting item.

Excerpts:

Thirty-eight percent of U.S. adults (or 85.6 million people) say they have doubted a medical professional’s opinion or diagnosis because it conflicted with information they found online. However, despite the growing power of the Internet, the majority of Americans still view health providers as their most trusted source of medical information.

Previous research indicates that trust in Internet resources is not widespread. However, this study suggests credibility may be influenced by who is authoring the content. Thirteen percent of Americans say they would consult medical professional-developed information posted on blogs, online forums or other Websites first if they believed they had a health condition or disease.

This study reveals that most adult Americans instinctually trust health providers. However, increasingly, they are using online information to critically evaluate medical advice. It also suggests that trust in government and non-profits has significantly eroded. Finally, health communicators and marketers should resist overestimating the impact of patient-generated online content on medical decision-making.

August 4th, 2008 | Category: Consumer Health Info, For Medical Libraryfolk, Technology | Comments (1)

I first wrote about Medpedia in January.

I noted in my post that Medpedia did not seem to specify what would qualify an applicant to become a contributor. Medpedia’s Angela Simmons addressed this in the comments:

Anyone with medical and health knowledge is encouraged to apply to become a Contributor. It is not a requirement that you have medical credentials; however, it is important that you are passionate and knowledgeable about at least one topic related to medicine, health and the body.

My concern here is that clinicians should not use an information resource built by people who are not qualified health professionals. Passion is not, in my view, a sufficient qualification.

I also asked Angela if Medpedia was intended to be a resource for professionals (like UpToDate) or a resource for healthcare consumers (like MedlinePlus). Angela replied:

Initially, Medpedia will be a resource for the general public. Over time, with 1000’s of clinicians and researchers on the site, discussing what should be on the main pages, Medpedia will also become a resource for medical professionals, health educators, and medical schools.

This did not seem promising to me. I don’t believe that a single article on a topic can appropriately serve both healthcare professionals and healthcare consumers- their needs are usually quite different.

Medpedia seems to have addressed some of these concerns since that time. Their index page now only invites “Medical Professionals” to “Apply to be a Member, ” and the FAQ says:

There are multiple ways of contributing. If you are an MD or PhD in the biomedical field, you can apply to become an Editor and make changes directly to Medpedia articles (See more below). If you are anyone else, you can use the “Make a suggestion” link at the top of any page to make a suggestion for that page. An approved Editor will review and potentially add your suggestion.

Also interesting to note that Medpedia will be advertising-supported (neither Ganfyd nor AskDrWiki are ad-supported. AskDrWiki is a non-profit). Again from the FAQ:

To support the costs of operation in the future, non-invasive, text-based advertising will be shown on the Medpedia website through third-party ad networks such as Google’s AdSense or Healthline’s third party ad service. Next to these ads on the page will be a link “Flag inappropriate ads” so that the community can keep the ads on the site clean and useful.

Then there’s the question of how reliable the content will be. The FAQ says:

The seed content available on Medpedia at launch is up to date, accurate, and provided by reputable sources. After launch at the end of 2008, once Editors start making edits and adding new pages to the seed content, it is possible, and even likely that there will be mistakes and language that is unclear. This is the nature of a collaborative wiki.

If the site is meant to be used by healthcare professionals, I’d strongly recommend a routine (Monthy? Quarterly?) review of each article by an admin to make sure the content is accurate and up-to-date. To say “it can’t be kept reliable because it is a wiki” is, in my thinking, a cop-out. After all, Medpedia’s own FAQ says the site is meant to be “…a platform to share the most up-to-date medical knowledge.” If the academic institutions listed on the front page of Medpedia wish to avoid embarrassment, I’d reccommend that they dedicate some time of their healthcare experts to regular review of articles.

Prediction:
(Just a guess, but) I think Medpedia’s content will end up focusing mostly on the information needs of healthcare consumers. In that sense, I think it’ll resemble MayoClinic.com

Criticism aside, here are some things about Medpedia that I DO like:

• Editors/contributors must be qualified health professionals
• Editors/contributors cannot be anonymous
• Content is freely usable under a GNU Free Documentation License

What do you think? Do you anticipate other problems I may have missed? Maybe you think I’m being too critical? Share your thoughts in the comments.

August 1st, 2008 | Category: "Social Software", Consumer Health Info, For Medical Libraryfolk, Technology, Wikis | Comments (4)

When discussing sites which allow patients to rate doctors, I have frequently heard the argument that the ratings wouldn’t really be useful or meaningful.

My response to this is that it doesn’t matter at all how accurate or meaningful the ratings on these sites are- users will like them (and use them) regardless.

My wife, for instance, spent a good bit of time examining books about pregnancy, parturition, and the care of infants. Rather than making use of the abundance of experts at her disposal (including midwives, OBs, medical librarians, and pediatricians), she took very seriously how well reviewed and rated each book was on Amazon.com.

Nevermind if the particular review of a particular book showed the reviewer to be ignorant and semi-literate. What mattered was that the ratings were overwhelmingly positive.

So here’s the advice I gave physicians at the 28th Annual AMA Medical Communications Conference:

Rather than fretting about potentially negative reviews on sites that allow patients to rate or review physicians (about which, after all, little can be done), the physician should place her/his efforts into building a very strong Web presence. Hire a white hat SEO consultant if you have to, but make sure that anyone Googling your name (or your practice’s name) sees YOUR site first in the search results.

August 1st, 2008 | Category: "Social Software", Consumer Health Info, For Medical Libraryfolk, Technology | Comments (1)

The following is a guest post written by PilgrimTinker (a pseudonym for a consumer health information librarian who regularly blogs at Learn to Live.
___________________________

So, you need to see a doctor. Or, you have been seeing a doctor for some time and love her, or can’t stand her, or secretly suspect him of not paying appropriate attention to your complaints or wonder if he knows anything about geriatrics. Whatever the initial question, you decide to google him. And you discover that there are dozens of physician rating websites available, ready to help you dig up dirt or make a choice or trash a reputation.

Have you guessed yet that I am feeling ambivalent about these sites? I am. On one hand, it makes perfect sense to be able to research a physician or facility before you choose them for your health care. It’s responsible health care consumerism. On the other hand, doctors aren’t used cars and the complexity of medicine and the nature of the relationship between a patient and a physician cannot be portrayed with a simple matrix.

With these considerations aside, another difficulty in assessing physician rating websites is the large number and variety of choices. Here I offer a sampling, by no means exhaustive but more of a snapshot. I’ve looked at many more and chosen these as fairly representative.

First, there are physician directories, offered by government sources or various medical associations. These will verify an affiliation or specialty, board certifications, and contact information. They don’t offer much or anything in the way of user satisfaction but will verify professional credentials and provide a list of practitioners in a geographic area or at a particular facility. For a good start finding this kind of directory, try MedlinePlus GoLocal, the US Dept of Health and Human Service’s HospitalCompare or the AMA’s DoctorFinder.

Now for that more problematic category, the sites that encourage patients to publish their opinions and experiences and to surf what others have already posted. Let’s take a look at a few.

RateMDs.com makes posting ratings very easy- no need to sign in or create an account. The comments are completely anonymous, though they are read by the moderators and may be removed or edited. This is a fairly common policy on physician rating sites. The site uses a smiley face system, based on 2 questions: Is the doctor helpful and Is the doctor knowledgeable.

The downfall of this simplicity is that the faces become meaningless; as demonstrated by the comments for an obstetrician I saw in another city long, long ago. Several can be summed up by “he save my life, we wouldn’t be here if not for him” while others amounted to “he doesn’t answer questions, I would never recommend him, he is uncaring”. The only way I can imagine a site like useful is if there were thousands of comments per physician before they were displayed and the questions were more skillfully stated, allowing the number of responses to create a trend.

DrScore.com is also easy to use and invited me to rank my doctor on a scale of 0 to 10, with an option to post up to 40 words worth of commentary. They encourage raters to note “particularly good things you noticed about the visit” and that “Ratings and comments submitted to DrScore are designed to give feedback to physicians to help them enhance their medical practice.” This is a different and much more positive twist on the usual protect-yourself-by-digging-up-the-dirt approach to promoting physician rating venues. The process included more questions rated 0 to 10 such as time spent with the doctor, if and how well the doctor answered questions, treatment options offered, treatment success and ease of communication with the entire practice. The search works best for those checking ratings of an individual so it took several tries to get a list of physicians in one city to browse by score. The scores are divided into category and displayed on a 0-10 scale, providing a more nuanced profile than RateMD.com’s smilies.

Vitals also allows for consumer ratings of physicians but gathers information from medical boards, federal websites, hospitals, doctors, surveys, business alliances and third party affiliates. I found this search interface to be the easiest to use and the results display very slick. There are several interactive features that actually work, such as a compare box that displays choices side by side and an alert feature for changes to a profile.

Results are divided into sections including specialty, hospital affiliation, education and publications, with links and mapping features.

The rating feature asked only 7 questions with a final overall assessment; asking patients to respond from disagree strongly to agree strongly. This leads to the same limitations as the other sites data, but there are several reasons I like this site better. One is the 360 vitals view, diagrammed on the about us page. It is divided into thirds for empirical information, consumer ratings and peer reviews. The site encourages consumers to think more broadly about what makes a good physician. The search interface and results were much better than any others I’ve seen. Every feature I tried worked as I had hoped, never asking me to sign in, pay for a report or requiring me to use a series of those annoying drop down choice boxes.

But seriously, what about that elusive quality, hotness? Yes, there is a website for that particular aspect of a physician’s fitness to practice and I found it, thanks to an ad on WebMD. PharmaStats promises plenty, including a special icon to alert us when a hot physician has been identified. Unfortunately, the site didn’t deliver- results only included the most basic yellow pages contact information and the chance to “register for more results”

While we are on the subject of unfair or irresponsible ratings, I can’t quite classify The Healthcare Scoop.com. At first, I thought maybe I wasn’t on the home page but found that yes, it is simply a list of random posts with no format at all. Or, as they describe it, “Real, straight-forward information – written and shared by people just like you – about personal healthcare experiences.” Patients simply create an account and post a story, which is then immediately posted. The site also includes ads and a few search features (by doctor, by facility) but doesn’t organize the collected information in any other way.

There are several websites that charge fees for reports about individual physicians, including Angie’s List and HealthGrades, which wanted me to buy a report to see Disciplinary action, board certification, phone numbers and much more! These seem to be the least useful and most likely to prey on those easily frightened by contorted statistics in headlines.

What exactly do you need to know to intelligently choose a doctor? Their clinical proficiency? Quality of their office service? Bedside manner? Personal experiences and biases? What they learned from their first surgery experience and how they responded to their first death? How many journals they read and if they know about the latest advances in medical genomics? What about if they are willing to prescribe antibiotics over the phone for your niece? Will any of these sites allow you to determine if your physician is well educated, experienced and open minded, willing to listen and think and to use her hands to keep you as healthy as possible for as long as possible?

Surf all day if you like, but I’ll have to default to what is emerging as my personal take on the whole health 2.0 movement- thanks, it is nice and I’m glad to partake but there is nothing like the human touch. Give me my blink moment, when that young pup/pretty face/tanned golfer reveals with an indefinable gesture or prescient connection that they have heard me, and even better, that they have a plan for me. Medicine is practiced face to face, so ultimately, it is the face to face assessment that will convince me of a physician’s worth.

____________

Interested in writing a guest post while David is on paternity leave? Send your submission to:

July 21st, 2008 | Category: "Social Software", Consumer Health Info, For Medical Libraryfolk, Guest Post, Medical Librarianship Blogs, Technology | Comments (5)

Hakia says they’re tapping the expertise of librarians. As CEO Dr. Riza C Berkan writes on the Hakia blog:

Every Web search starts with two queries. One is X. The other one is “who knows X the best?” Because finding X is not enough if the author of that page does not know X himself/herself. This will immediately resonate with you if you ever searched for medical, legal, or financial information for a serious case.

This was called the “credibility” criteria in the old world-order which has progressively vanished in the new age of Internet search engines. You enter X, and get the same “popular” perspective without distinction of credibility. You may recognize some of the sources, but are you an expert yourself about these things?

Ironically, there is a science for this. It is the science of libraries and librarians. That’s their job. They know what is credible, trustworthy, and commercially-unbiased.

So how does Hakia leverage librarian expertise? They say it is by indexing “quality sources” which are “taken from the Medical Library Association recommendations.”

That’s a great idea of where to start, but anyone could accomplish the same by making a Google CSE like this one. The Google Health Co-op greatly surpasses Hakia’s effort here by including a greater number of recommended sites and greater value from having more authoritative recommenders than just the MLA.

Also interesting is that Hakia has created a little micro-portal for each of the following sites:

PubMed – http://pubmed.hakia.com
World Health Org – http://who.hakia.com
ClinicalTrials.Gov – http://clinicaltrials.hakia.com
Centers for Disease Control – http://cdc.hakia.com
The National Cancer Institute – http://nci.hakia.com
National Heart, Lung and Blood Institute – http://nhlbi.hakia.com

Mayo Clinic – http://mayoclinic.hakia.com
familydoctor.org – http://familydoc.hakia.com
Healthfinder – http://healthfinder.hakia.com
HIV InSite – http://hivinsite.hakia.com
Kidshealth – http://kidshealth.hakia.com
Medem – http://medem.hakia.com
MEDLINEplus – http://medlineplus.hakia.com
NOAH – http://noah.hakia.com
American Cancer Society http://acs.hakia.com
Cancer Care, Inc. – http://cancercare.hakia.com
Oncolink – http://oncolink.hakia.com
Women’s Cancer Network – http://womenscancernet.hakia.com
American Diabetes Assc. – http://ada.hakia.com
diabetes123 – http://diabetes123.hakia.com
Children with Diabetes – http://childrenwithdiabetes.hakia.com
The Diabetes Monitor – http://diabetesmonitor.hakia.com
Joslin Diabetes Center – http://joslinharvard.hakia.com
National Institute of Diabetes & Digestive & Kidney Diseases – http://niddk.hakia.com
American Heart Association – http://aha.hakia.com
Congenital Heart Information Network – http://tchin.hakia.com
March of Dimes – http://marchofdimes.hakia.com

These are also interesting, but superior results could be achieved using existing tools. Rather than searching Hakia’s portal for the American Heart Association for myocardial infarction, we could more easily search Google for myocardial infarction site:americanheart.org and make use of Google’s further refinements from there.

April 21st, 2008 | Category: CSEs, Consumer Health Info, For Medical Libraryfolk, Perception of Libraries/Librarians, Search, Technology | Comments Off

J Am Coll Radiol. 2008 Apr;5(4):593-7.
Quality of CT colonography-related web sites for consumers.
Sheran J, Dachman AH.

Department of Radiology, University of Chicago Hospitals, Chicago, Illinois 60637, USA.

PURPOSE: Patients often request to undergo computed tomographic colonography (CTC) from radiologists or referring physicians on the basis of their personal examination of information on the Web. Therefore, the authors examined the information on CTC and virtual colonoscopy available for consumers on the Web to assess its quality. MATERIALS AND METHODS: The term virtual colonoscopy was entered into 3 popular search engines: Google, Yahoo, and MSN. In each case, evaluation was limited to the first 50 Web sites, or hits, which were recorded and analyzed for content, comprehensiveness, and accuracy. RESULTS: Sixty-seven Web sites were deemed appropriate for further analysis. More than half of the sites reported currency dates more than 2 years old. Only a third of the sites included information about the risk factors for colorectal cancer. About a third of the sites did not explain the indications for the use of CTC, and the remaining sites lacked consistent descriptions of the indications. Few Web sites offered or described the option of performing same-day optical colonoscopy for patients with abnormal results on CTC. CONCLUSION: The data suggest that patients are often armed with very incomplete information from Web sites on CTC. Web sites were often found to be outdated, to contain conflicting information, and were lacking descriptions of patient risk factors for colorectal cancer. Several suggestions are made to improve the dissemination of comprehensive, current, and accurate information.

PMID: 18359448

_____________________________

Hum Reprod. 2008 Mar 27 [Epub ahead of print]
Infertility information on the World Wide Web: a cross-sectional survey of quality of infertility information on the internet in the UK.
Marriott JV, Stec P, El-Toukhy T, Khalaf Y, Braude P, Coomarasamy A.

Assisted Conception Unit, Guy’s and St. Thomas’ Hospital NHS Foundation Trust, Thomas Guy House, Guys Hospital, 4th Floor, London SE1 9RT, UK.

BACKGROUND The internet is a frequently used source of information for infertile couples. Previous studies suggested that the quality of health information on the internet is poor. The aim of this study was to assess the quality of websites providing information on infertility and its management in the UK. Differences between website types and affiliations were assessed. METHODS A Google search for the keyword ‘infertility’ was performed and 107 relevant websites were identified and categorized by type. Websites were assessed for credibility, accuracy and ease of navigation using predefined criteria. RESULTS The total scores for all types of websites were low, particularly in the accuracy category. Websites affiliated to the UK National Health Service (NHS) scored higher than those affiliated to private fertility clinics and other clinics providing non-conventional fertility treatment. Specifically, NHS websites were more likely to report success rates (92.9% versus 60% and 0%, P PMID: 18372253

_____________________________

Am J Pharm Educ. 2008 Feb 15;72(1):10.
Online social networking issues within academia and pharmacy education. [Free full text]
Cain J.

University of Kentucky College of Pharmacy, USA.

Online social networking sites such as Facebook and MySpace are extremely popular as indicated by the numbers of members and visits to the sites. They allow students to connect with users with similar interests, build and maintain relationships with friends, and feel more connected with their campus. The foremost criticisms of online social networking are that students may open themselves to public scrutiny of their online personas and risk physical safety by revealing excessive personal information. This review outlines issues of online social networking in higher education by drawing upon articles in both the lay press and academic publications. New points for pharmacy educators to consider include the possible emergence of an “e-professionalism” concept; legal and ethical implications of using online postings in admission, discipline, and student safety decisions; how online personas may blend into professional life; and the responsibility for educating students about the risks of online social networking.

PMID: 18322572

_____________________________

Catheter Cardiovasc Interv. 2008 Feb 15;71(3):441-4.
SCAI launches seconds-count.org: An interventional cardiology resource for patients and physicians.
Weiner BH, Marshall JJ.

St Vincent Hospital at Worcester Medical Center, Worcester, MA 01608, USA. president@scai.org

PMID: 18288740

[Okay, not a lot in the abstract, but check out the site.]

April 3rd, 2008 | Category: Consumer Health Info, For Medical Libraryfolk, Online Social Networks, Technology, Web Geekery in Recent Literature | Comments Off

Info.RxCases is a “companion to a new health information service that is being offered to patients and their families at the Herzl Family Practise Centre in Montreal, Quebec.”

Blogger Francesca Frati (previously mentioned here) writes:

The Patient health Information Service at Herzl (H-PHIS) opened its doors in early July of this year (2007) and is in the early developmental stages. The challenges faced by myself (the service’s coordinator), the staff, and the health care team at the HFPC are many and varied, as is to be expected when implementing a new and innovative service.

Perhaps the most unique aspect of the InfoRx model is the presence and participation of the information professional/librarian at point of care. This new and multidisciplinary approach presents a distinctive challenge. Health and support staff are not always clear on what knowledge and skills a librarian brings to the team. Conversely, I must be able to recognize and adapt to the needs and character of the community and of the setting itself.

This blog was created in response to some very astute and constructive criticism. After presenting to the residents at their weekly rounds, I was approached by one of the partners at the clinic who suggested that rather than introducing myself and the service and then explaining how to use it, it would have been more effective to present some cases illustrating what the service has to offer to the residents and to their patients. I see this as a perfect example of the kind of disconnect that can happen when two very different professions come together. In essence I had presented the way I would have to my own professional colleagues, but this was not the most appropriate approach given my audience.

After giving it some thought it occurred to me that it could be useful, both for myself and the rest of the team, for me to present a weekly case here, and talk about some of the challenges we are faced with and how these might best be resolved. Hopefully this will introduce some transparency to the InfoRx process.

This is meant to serve as a record of, and forum for discussion about, our challenges and successes. It is hopefully also an opportunity for other information professionals to be inspired by one example of what can be accomplished outside of the library setting.

Such a great idea.

Why is David always on about this badgey stuff? Badges? We don’t need no stinkin’ badges!

Previously, I’ve noted the following blogs that display the MedLib Blog badge in their sidebars:

• Bobobiblioblog
• Patient Education Matters!
• Staying Well. Connected.
• Info Long Term Care
• OrgMonkey
• EBM & CSL @ UCHC
• Learn to Live
• Shelved in the W’s
• Only Connect!
• Women’s Health News
• The Krafty Librarian
• OMG Tuna is Kewl
• iLib blog
• Saskatoon Health Region Medical Library blog
• Health, Science, & Libraries
• Biomedbiblog
• Clinical Evidence, Searching Tidbits, and Other Minutiae
• DigiCMB
• JMLA Case Studies in Health Sciences Librarianship
• Librarians’ Rx
• medinfo
• MGAS News
• Musings of a Medical Librarian Maven
• Professional Notes
• UBC Physio Info-blog

These blogs are:

1. about medical / health / health sciences / biomedical librarianship;
2. written by (a) medical librarian(s) or medical library paraprofessional(s);
3. maintained by a medical library; or
4. maintained by professional association of medical librarians and/or medical library paraprofessionals.

Hey! My blog has the MedLib Blog badge and you haven’t featured it here!

Sorry! I do try for omniscience, but frequently fall short of this goal. If I’ve missed the badge on your blog or if you’ve just added it, please let me know so I can link to it from here.

Why would I want to add the badge to my blog?

The badge links back to the masterlist of MedLib blogs to indicate the blog’s membership in the growing community (and sense of community) of MedLib blogs(/bloggers). (This should serve also as a reminder to add your blog to this masterlist, if appropriate.)

To add this badge to your own blog, just copy and paste this code:


<a href="http://liswiki.org/wiki/Medlib_Blogs">
<img src="http://tinyurl.com/y32hh8/"></a>


Not sure how to do this with your particular blogging software? Email me at david[DOT]rothman[AT]gmail[DOT]com and we’ll figure it out together.

March 26th, 2008 | Category: Blogging, Consumer Health Info, For Medical Libraryfolk, Medical Librarianship Blogs, Technology | Comments Off

But PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.

PatientsLikeMe’s privacy policy clearly states that this sharing carries risks. It acknowledges that since anybody can register at the Web site, anybody can look at member profiles. It makes clear that there’s no guarantee that registered members are, in truth, who they say they are. And it nods to the fact that, yes, this is a business, not a public service — some personally identifiable information may be sold to “approved vendors.” But this is boilerplate. The most striking notice is the company’s Openness Philosophy, a manifesto posted prominently on the site.

“Currently, most health-care data is inaccessible due to privacy regulations or proprietary tactics,” it declares. “As a result, research is slowed, and the development of breakthrough treatments takes decades. . . . When you and thousands like you share your data, you open up the health-care system. . . . We believe that the Internet can democratize patient data and accelerate research like never before.”

Read the rest

March 22nd, 2008 | Category: "Social Software", Consumer Health Info, For Medical Libraryfolk, Online Social Networks, Technology | Comments Off

I got a number of interesting responses to my post on Susannah Fox’s brief speech.

Susannah’s work at the Pew Internet & American Life Project is really good stuff and I enthusiastically recommend reading all of it- but I gave her a hard time for elements of her remarks at the Health 2.0 (non-)conference in San Diego a couple weeks ago because I felt these elements were poorly reasoned or misleading. Susannah’s remarks probably bothered me more than they should have because I had the unreasonable expectation that she could do as well in a few spoken minutes what she usually does in longer-form writing.

In response to my kvetching, Susannah graciously posted the 2001 press release from the American Medical Association that she mentioned in her remarks and says of it:

I incorporated the AMA release into my remarks at Health 2.0 as an example of an organization that was slow to adapt to the new realities of the information marketplace…

Here’s an image of the section:

The text says:

6. Remember that the Internet cannot replace a physician’s experience and training.

Millions of Americans go to the Internet for health-related information, but people who use it to self-diagnose and self-medicate may be putting themselves at risk. Only your physician has the necessary experience and medical training to diagnose and treat medical conditions. If you have questions, trust your physician, not a chat room.

I think that it could’ve been written better, but that this is still good advice today. There’s nothing wrong with a patient doing research with reliable online sources and having that research inform the patient’s communication with healthcare providers, but trusting advice from a chat room over advice from your doctor is, without question, unwise.

Others have responded, like Gilles Frydman, Ted Eytan and
e-patient Dave. These responses have made clear that I need to clarify my position.

I do not believe and have not said that:

• Doctors are always right (Dr. Haig, for example, is wrong on multiple levels)
• Patients should not seek information outside their relationship with their doctors (I have a post category for consumer health information with a sizeable number of posts)
• Patients should not seek information on the internet (see this post about the use of the term “cyberchondriac” in the mainstream media)
• Patient support groups are without value (though they’re probably not as good for patients as they could be if they’re run by pharma companies)

There is no question that when one is facing illness (especially severe illness), it makes sense to seek information from any insightful source, including other patients. Some of the information available from other patients is nuts-and-bolts practical¹, other information is shared by patients fortunate enough to be receiving the best available care and passed to patients less fortunate who can press their doctors to pursue newer methods of treatment. That this (rightly) takes place isn’t new, the Web just makes it a lot more efficient.

But some patient-generated sources just stink (examples include iMedix and MamaHerb), and no amount of personal belief in the concept of the “wisdom of crowds” will change that. The AMA was right in 2001 (and would still be right today) that no online resource “can replace a physician’s experience and training.” They were (and remain) right to warn against trusting a chatroom over one’s physician. Self-diagnosing and self-medicating can and do cause harm (ask any emergency room healthcare professional).

Gilles, no bright physician is trying to “do to alone.” Every physician I know who has expressed skepticism about the efficacy and safety of online health information has done so out of concern of what is best for her/his patients. I don’t doubt that there exist shabby physicians who have knee-jerk reactions based primarily on fear about their place in a rapidly changing healthcare market, but I believe those are the exception- not the rule. Scolding physicians with unsupportable hyperbole (or making non-analogous comparisons of the AMA to the RIAA) will not prove an effective way to convince them of anything.

March 19th, 2008 | Category: "Social Software", Consumer Health Info, For Medical Libraryfolk, Technology | Comments (5)