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Archive for Consumer Health Info

Physician Rating Sites (Guest post by PilgrimTinker)

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.

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

Hakia’s Health Search

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.

Web Geekery in Recent Literature: 4/3/08

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

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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

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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

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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.]

MedLib Blog Badge at Info.RxCases

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:

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. :)

New York Times on PatientsLikeMe.com

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

More on “Health 2.0″ and patient-generated online information

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.


1 Mark Achler told me about a patient survey he was involved with while at Emmi Solutions in which patients who had sub-venous access ports in their chests were asked what advice they’d give to other patients who were about to have a port. Two notable suggestions: [1.] Female patients could take a black magic marker and draw the outlines of their widest bra strap so that when the doctor placed the port he could avoid having the bra strap be over it. [2.] Patients could being a pillow for the car ride home to protect the port from the shoulder strap. This stuff strikes me as gold (though I’d probably still check with my doctor before I did either thing).

Interview with Mark Achler of Spine-health.com

I had a really interesting conversation last week with Mark Achler of Spine-health.com (and formerly of Emmi Solutions). Mark agreed to allow me to use GrandCentral to record the call- and I used SlideShare to make the SlideCast embedded below.

Above: Embedded SlideCast. If you’re reading this in an aggregator, you may need to visit the site to view/hear the SlideCast.

What do you think?

  • Would you recommend this site as a patient education resource?
  • Would more recorded interviews with the people behind health information sites be a welcome feature here?

Kvetching about Susannah Fox and “Health 2.0″

This is a good example of the kind of “Health 2.0″ stuff that baffles me. The speaker in this video is Susannah Fox of the Pew Internet and American Life Project. She is speaking at the Health 2.0 Conference. You can watch the embedded video or read the text of her remarks (from here) beneath it.

After the market crash, there were quite a few people on the internet sidelines who were eager to say “I told you so” and warn people against the dangers of the internet. My favorite example is the 2001 press release from the American Medical Association suggesting that Americans make a New Year’s resolution to “trust your physician, not a chat room” since the information found online puts “lives at risk.”

So…is Fox actually disagreeing with those who think it wiser to seek advice from physicians than to take seriously medical advice received from anonymous strangers in internet chat rooms? As I see it, acting on medical advice from an unidentified, unqualified strangers on the internet can “put lives at risk.”1

Of course most people ignored that advice and flocked online for health information, just as they ignored the advice of the recording industry and flocked to music downloading sites.

This analogy to the recording industry is a very poor one.

If a consumer illegally downloads an mp3 of a commercially-available pop tune instead of buying it on iTunes, he is essentially getting the same product (the same audio, compressed for fast downloads) in a superior version (no DRM) for a lower cost (free instead of about a buck). If a consumer goes to an unidentified stranger in a chat room, he’s probably not getting a qualified physician (at the very least, he has no assurance that the person he’s taking advice from has the appropriate education and skills to dispense advice), so he’s consuming a significantly inferior product.

When the RIAA advises people not to download songs illegally, they do so because they believe illegal downloads erode the profits of the recording companies. It cannot, however, be argued that pirated music could do harm to consumers. When the AMA advises that doctors are a more trustworthy source than strangers in chat rooms, they very well might be trying to protect the income of primary care physicians- but they’re also right that medical advice from unqualified, unidentified providers can cause harm.

Fox goes on in the extended text version of her remarks:

But let’s give the AMA some credit. Inaccurate and outdated medical information does exist online.

To say that “[i]naccurate and outdated medical information does exist online” is an awful understatement that seems to erroneously imply that online healthcare misinformation is rare.

Medical librarians say people should check the source and date of the health information they find online. But few sites display those quality markers and few e-patients look for them.

First, medical librarians judge the quality of an online resource by a whole lot more than just the source and date.

Second, really reliable sites absolutely do display these markers. If few patients look for quality indicators, the reasonable solution is to help healthcare consumers be more discerning and to help guide them quickly to quality information. One way physicians and other healthcare providers can help their patients do this by directing them to MedlinePlus. Also, if consumers don’t have the information literacy to navigate the health information published online by authoritative institutions like the National Library of Medicine, how the heck are they going to sort through the inevitably massive amount of information put up by other consumers?

I do not believe that online resources collaboratively created by patients will solve the problems and dangers of healthcare misinformation online.

Let us say that a healthcare consumer has heard that ginkgo biloba will help improve his concentration. He visits MamaHerb (a consumer-created wiki for “natural remedies”) and decides there’s no reason why he shouldn’t start taking ginkgo.

MedlinePlus, on the other hand, goes into significant detail about potential risks and reasons why our consumer might want to reconsider or discuss with his physician before taking ginkgo.

Semantics
Some will probably say that I’m defining “Health 2.0″ too narrowly. After all, the term only makes sense if it refers to the application of “Web 2.0″ trends to the needs of healthcare consumers. The Health 2.0 Conference apparently featured Phreesia, an service which I cannot work out a way to describe as “Web 2.0.”. 2


1 I’d also really like to see that AMA 2001 press release- I haven’t been able to find it yet..

2 Phreesia is an application which offers providers’ offices a convenient technology in exchange for the opportunity to market drugs to the patient. As a patient, I’m already annoyed with how badly physicians allow pharma marketing to infiltrate their offices and bombard their patients. So if “Health 2.0″ is just a buzzword for “innovations in healthcare IT” or “the next generation of healthcare,” why bother with the “2.0″ suffix?

Nitpicks: CNN’s “Tips for savvy medical Web surfing”

Blame Rachel. She started it by offering a critique of CNN’s Tips for savvy medical Web surfing:

In this section about searching for articles in the major medical literature database, PubMed, Guthrie advises reading just the beginning and end of the study, stating that “The conclusion will tell you whether the treatment they studied was effective, moderately effective, or not at all effective.”

This is simply not true as an absolute, and it is the exact opposite of how many expert medical librarians are trained to read papers. The abstract, introduction, conclusion and discussion sections of a paper most reflect the way the authors want to present their data, and may exaggerate findings or make statements that are not supported by the methodology and data. These are the very sections in which authors attempt to make their case for why their work matters – they tell you what the authors think their findings mean, but don’t actually prove it definitively.

Rachel is right. Her criticism moved me to re-read the article with a more critical eye. Here are some nitpicks:

The CNN article says:

To get rid of the junk, use a search engine that looks only at reputable sites that have been vetted by health professionals. Dirline, run by the National Library of Medicine, is one such engine, as are medlineplus.gov and Imedix.com. Healthfinder.gov searches for information on government health Web sites.

First, neither Dirline or MedlinePlus are search engines. Dirline is a searchable directory of organizations in healtthcare, MedlinePlus searches only its own content, including links to external reputable resources. (See? Nitpicking.)

Second and more importantly, it is ridiculous to compare iMedix to MedlinePlus and to describe iMedix as a resource that looks “only at reputable sites that have been vetted by health professionals.” iMedix’s own About page says:

Whether you’re looking for symptoms, diseases, treatments, or simply general health information, you will be searching together with many other people. Members of the iMedix community assist each other by sharing their experiences and ranking medical content in order to make health information personal, organized and accessible to any individual.

[My emphasis]

Translation: The information on iMedix isn’t vetted by health professionals- it is vetted by other laypeople.

It shows, too. I tried searching for Crohn’s. Here are the top results:

High-quality links vetted by health professionals? Comparable to MedlinePlus in any way? No.

Web Geekery in Recent Literature – 2/17/2008

More about online consumer cancer information

Cancer Invest. 2008 Mar;26(2):202-7.
Internet health resources and the cancer patient.
Huang GJ, Penson DF.
Department of Urology, Keck School of Medicine, University of Southern California, Los Angeles, California 90089, USA.
The last decade has witnessed an explosion of online information regarding cancer and healthcare. Accompanying this has been a large body of research analyzing the quality of this information, how patients perceive these data and how this affects the doctor-patient relationship. This report reviews this literature, summarizing the current state of internet health resources available to the cancer patient and identifying areas for future research. Studies indicate that there are considerable internet resources available to cancer patients and that patients are using these resources as secondary information sources. Specifically, studies indicate that 16-64% of patients are using the internet to obtain health information. For the most part, patients perceive the online information to be reliable but maintain a healthy degree of skepticism. Studies objectively evaluating cancer information on the internet indicate that there is reasonable quality, although the language level of many sites is higher than that of the average American, which may limit the utility of the websites. Finally, while there is widespread internet use by physicians, healthcare providers are skeptical of their patients’ ability to use the internet and may even be somewhat threatened by it. In summary, while there is a fairly large literature on internet resources available to the cancer patient, more research is needed. Specifically, it is important to better understand how patients access health information online and their associated preferences so that we can improve cancer patient’s access to high quality health information on the internet to facilitate decision-making and health outcomes.
PMID: 18259953

Webcasting for dentistry education!

Br Dent J. 2008 Feb 9;204(3):145-9.
Webcasting: casting the web more widely.
Reynolds PA, Mason R, Eaton KA.
Centre of Flexible Learning in Dentistry, King’s College London Dental Institute, Floor 3, Strand Bridge House, 138-142 Strand, London, UK. P.A.Reynolds@kcl.ac.uk
In the search for a cost-effective method of delivering teaching to dispersed groups of students, webcasting is proving successful. By taking video streams and transmitting them over the Internet it allows events such as lectures, seminars, webinars and tuition sessions to be made accessible to participants in many different, remote locations. Moreover, the webcasts can be stored on a normal PC to give, those unable to see the original broadcast, the opportunity to watch it at a later, more convenient time; similarly it can be used by students for revision purposes. New developments have allowed a useful level of interactivity between presenters and students, and between students themselves. As part of a recent project at a UK dental school, webcasting was trialed amongst undergraduates and postgraduates to measure its value for dental education. The results have been very encouraging, with the latter group especially benefiting from being able to see the webcasts in their own time, on their PCs at home or work. However, as befits an ever-changing scenario, a new web-oriented facility is beginning to play a role in education: podcasting provides a more personal, individual interaction with the web.
PMID: 18264069

Web Geekery in Recent Literature – 2/15/2008

On the internet and patient education:

Clin J Oncol Nurs. 2008 Jan;12(1):55-63.
The internet: friend or foe when providing patient education?
Anderson AS, Klemm P.
James P. Wilmot Cancer Center, University of Rochester Medical Center, Rochester, NY.
The Internet has changed how patients with cancer learn about and cope with their disease. Newly diagnosed patients with cancer often have complex educational and informational needs related to diagnosis and treatment. Nurses frequently encounter time and work-related constraints that can interfere with the provision of patient education. They are challenged to educate patients in an environment of rapidly expanding and innovative computer technology. Barriers that hinder nurses in integrating educational Internet resources into patient care include lack of training, time constraints, and inadequate administrative support. Advantages of Internet use for patient education and support include wide-ranging and current information, a variety of teaching formats, patient empowerment, new communication options, and support 24 hours a day, seven days a week. Pitfalls associated with Internet use for patients with cancer include inaccurate information, lack of access, poor quality of online resources, and security and privacy issues. Nurses routinely use computer technology in the workplace and follow rigorous security and privacy standards to protect patient information. Those skills can provide the foundation for the use of online sources for patient teaching. Nurses play an important role in helping patients evaluate the veracity of online information and introducing them to reliable Internet resources.
PMID: 18258575

Anglophonic Canadians seeking healthcare info online:

Health Informatics J. 2008 Mar;14(1):17-28.
Use of health-related information from the Internet by English-speaking patients.
Khechine H, Pascot D, Prémont P.
Departement of Information Systems, Faculté des sciences de l’administration, Université Laval, Quebec, Canada G1K 7P4. hager.khechine@sio.ulaval.ca.
The aim of this research is to determine the kinds of health-related information that patients seek more often from websites written in English, and at which stages of the healthcare decisional process they use this information more intensively. A quantitative study was performed. Canadian English-speaking patients who have long-term diseases and who use the Internet completed an 18-item questionnaire online. Respondents were questioned about the categories of health-related websites they visit the most (scientific, general, commercial websites, or discussion groups) and the stages of the medical decisional process during which they use the information obtained (identification of possible treatments, treatment choice, and treatment application or follow-up). Results show that respondents use Internet information displayed in English mostly at the stages of identification of possible treatments (94.2%) and treatment application or follow-up (86%). At these two stages, patients look more often for information from scientific websites.
PMID: 18258672

You’ve probably already heard about this one- but just in case you haven’t…

Cancer. 2008 Feb 11
Commonly cited website quality criteria are not effective at identifying inaccurate online information about breast cancer.
Bernstam EV, Walji MF, Sagaram S, Sagaram D, Johnson CW, Meric-Bernstam F.
School of Health Information Sciences, University of Texas Health Science Center at Houston, Houston, Texas.
BACKGROUND: Consumers increasingly consult the Internet for breast cancer information. Concerned about accuracy, multiple organizations developed quality criteria for online content. However, the effectiveness of these tools is unknown. The authors determined whether existing quality criteria can identify inaccurate breast cancer information online. METHODS: The authors identified 343 unique webpages by using 15 breast cancer-related queries on 5 popular web search-engines. Each page was assessed for 15 quality criteria and 3 website characteristics, link type (sponsored or not), search engine used to find the page, and domain extension. Two clinician-reviewers independently assessed accuracy and topics covered. The authors then determined whether quality criteria, website characteristics, and topics were associated with the presence of inaccurate statements. RESULTS: The authors found 41 inaccurate statements on 18 webpages (5.2%). No quality criteria or website characteristic, singly or in combination, reliably identified inaccurate information. The total number of quality criteria met by a website accounted for a small fraction of the variability in the presence of inaccuracies (point biserial r = -0.128; df = 341; P = .018; r(2) = 0.016). However, webpages containing information on complementary and alternative medicine (CAM) were significantly more likely to contain inaccuracies compared with pages without CAM information (odds ratio [OR], 15.6; P < .001). CONCLUSIONS: Most breast cancer information that consumers are likely to encounter online is accurate. However, commonly cited quality criteria do not identify inaccurate information. Webpages that contain information about CAM are relatively likely to contain inaccurate statements. Consumers searching for health information online should still consult a clinician before taking action. Cancer 2008. (c) 2008 American Cancer Society.
PMID: 18266210

Crohn’s & Me

A stack of flyers for this online community was seen in the examination room of a gastroenterologist and passed on to me by an acquaintance.

Interesting. Seems that the site is a product of UBC Inc.

UBC makes Dipentum (Olsalazine) for the treatment of Ulcerative Colitis and Cimzia (Certolizumab Pegol) for the treatment of Crohn’s disease.

I don’t trust a pharmaceutical manufacturer to offer unbiased information to healthcare consumers and I can’t figure out why a physician would put these in his office.

Are there other portals that are run by drug companies? If you’ve checked them out, what do you think of the information or services they offer?

I’d feel a lot better about a social network for patients with Crohn’s or Colitis if it was run by the CCFA…wouldn’t you?

FreeMD

Made by DSHI Systems (who it appears have been making products like these for at least a few years), FreeMD is meant to be “…an electronic doctor that conducts an interview, analyzes symptoms, and provides expert advice — for free.”

It sounds like a good idea that’d be really hard to execute usefully…but it’s really pretty impressive.

Mayo and Microsoft to Collaborate on Consumer Health Management Tools

Check out the press release from the Mayo Clinic:

ROCHESTER, Minn., and REDMOND, Wash. — Mayo Clinic Health Solutions and Microsoft Corporation’s Health Solutions Group announced today that they have entered into a strategic agreement to collaboratively develop tools that will empower people to manage their health and become engaged partners with their providers in a new model of health care.

As leaders in their respective industries, both organizations recognize the potential for technology solutions to help bridge the gaps in the health care system, to facilitate closer patient-to-physician connections, and to allow patients and consumers to better manage their health and wellness information. The collaboration will benefit from Microsoft’s significant technology expertise and Mayo Clinic’s experience in health care.

The organizations hope to announce further details of the project before the end of 2008.

“We are committed to finding new technology solutions that put the patient and consumer in control,” says Brooks Edwards, M.D., chief medical officer, Mayo Clinic Health Solutions. “Our work with Microsoft is an exciting opportunity to create tools that empower patients to be in the very center of their own health care environment.”

“Consumers demand and deserve tools that make their lives easier, facilitate communication, and help them take action to manage their health,” says Peter Neupert, corporate vice president, Microsoft Health Solutions Group. “Building on the Microsoft HealthVault platform, our groups are committed to providing individuals with solutions that are dynamic, secure, and focused on the needs of the user, in order to effectively improve health and well-being.”

Wow. Mayo’s name would do a lot to lend respectability to Microsoft’s HealthVault efforts. I’ll be very interested in hearing details about what each organization will bring to their collaborative projects.

I’ll also be interested to know if Mayo is wise enough to bring into these efforts their in-house experts on consumer health information tools- they have great patient libraries and librarians.

Online Drug Interaction Checkers

When it comes to needs inside our hospital, we have expensive professional tools available on our intranet that allow clinicians to check for drug interactions. In preparation for our library’s eventual internet presence, I wanted to see if there was a free, consumer-oriented tool that we might feel okay recommending.

I decided to try out several of them to see what they had to say about Ketorolac and Ibuprofen, a combination that one of our hospital’s PharmDs1 tells me any interaction checker should absolutely, positively catch as a Very Bad Idea.

  • DoubleCheckMD.com

    I had tried DoubleCheckMD previously, but went back to try it again. I find the look and layout of site aesthetically appealling and I really like how it’ll suggest complete drug names after the user enters the first three letters.

    I find it interesting how the report is split into three parts. First it gives the basic answer in English, then more detail in English, then a short statement in what we might call “MedSpeak.” This could perhaps help make the danger understood to a greater number of users.

    However: immediately above the information in the screen capture above, DoubleCheckMD says

    “Below is a list of your drug combinations that can cause problems. Note that these problems are RARE. In most cases, these drugs are safe to take together.’

    That’s a bit confusing, isn’t it? It seems to contradict the content that immediately follows (”This medication combination is not recommended and should be avoided”).

    Another minor annoyance is that one must register in order to use this tool and log in the next time one wants to use it.

  • PDRHealth Drug Interaction Tool

    Having played with DoubleCheckMD first, I found that I missed the convenience of the way DoubleCheckMD auto-completed drug names.

    Also, the results seem…I don’t know…less than clear, somehow. For me, they suggest that taking these drugs together might be a bad idea rather than saying clearly that one simply should not do it.

  • Express Scripts’ Drug Digest

    Huh. Looks like I’m not going to be recommending this one. It failed to see a problem with taking Ketorolac and Ibuprofen together:
  • Drugs.com: Drug Interaction Checker

    This one has a pleasant auto-complete function and the results seem pretty unambiguous:
  • DiscoveryHealth Drug Interaction Checker

    I won’t be recommending this one either because of its horrible interface for entering drug names. Rather than searching for a drug or having drug names suggested as you type, you have to select the first letter of the drug’s name, then scroll to the drug you want. Awful, awful interface. The results were okay:

  • CVS/Caremark Drug Interactions

    I really like the clear, straight-forward wording of the results in this one:

    Also, this checker also offers to check for interactions with foods, alcohol and tobacco:

Are there others I should try? Are there particular features of these that you like or dislike? Do you recommend any of these or similar tools to patients? Please leave a comment and let me know!


1 This PharmD, Kathleen LaParne is wonderful. She’s smart, she’s generous with her expertise and time, she’s awfully nice and the way that she so clearly and strongly *cares* about doing what is best for patients makes her one of my favorite people in the hospital where I am employed.

MedLib Blog Badge at Patient Education Matters!

Patient Education Matters!” is a bi-weekly e-newsletter for the staff and volunteers of Inova Health System. The “Patient Education Matters!” blog is an abridged version of this publication available to the general public.


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:

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. :)

Health Literacy Page at MedlinePlus

(This is the last post of 2007.  I’m not addicted to blogging.  I mean it.  I can stop any time I want!)

MedlinePlus has a new page on Health Literacy with links to lots of good stuff.

Clinical Trial Search Tools

Michelle Nguyen over at HippocraTech posted about a couple of places online to search for info about clinical trials: ClinicalTrials.gov and CenterWatch. Below are a few additional online resources.

“Health 2.0″ on Television (Scrubs)

I’m NOT obsessed with television just because I wrote about House MD, the writers strike, and now Scrubs. I’m not. Really.

…Oh, shut up and give me the remote.

The TV show Scrubs mentioned tonight both online rating of physicians and patients who rely on health information from Wikipedia.

Dr. Cox: So you’re declining chemo because Wikipedia says that a Raw Food diet reverses the effects of Bone Cancer…? Well, hey- any info you have that I can pass on to my other patients would just be super… and by-the-by…while you’re on your computer perhaps you could jump over to a little site called rateyourdoc.org…?

…a few minutes later…

Patient: There. I gave you five stars.

Dr. Cox: Thank you! And now, I have to take your laptop from you as I’ve deemed you just too darn stupid to use it. See, those bell peppers that you’re munching? They aren’t going to do a truckload of jack against the cancer raging inside of your body. Of course, I’ve only been a doctor for some TWENTY YEARS and the person who wrote that Wikipedia entry also authored the Battlestar Galactica Episode Guide…so what the heck do I know…? But… if you feel like living? Page me.

Hah! NBC actually made a Web site for RateYourDoc.org!

And I did get a result when I searched for a Wikipedia article on Raw Food that mentioned it as a cancer treatment. See screen capture below:

Mattering only if you share my tastes in music: The soundtrack to the episode featured a track by one of my all-time favorite bands- Jump, Little Children, most of whom I met in 1992 at NCSA. If you can, get yourself copies of the Licorice Tea Demos and Buzz. Or order The Early Years. Good guys, great music. I went to see them live every chance I had.

Social Technologies for eHealth (presentation slides)

Patricia Anderson keeps posting slides for presentations she gives. If her slides are any indications, these presentations must be really, really good.

Created as a podcast for the Dental Informatics Online Community, this is snapshot of what is going on with social technologies and Web 2.0 in various healthcare communities.

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