Mar 31

When the user actually *is* broken (Anna Kushnir and PubMed)

I have distinct childhood memories of asking my mother what one word or another meant. She would point out that there was a dictionary close at hand designed exactly for that purpose and invite me to make use of it.

I remember asking my father to teach me to program in BASIC. He cheerfully agreed and handed me the big brown manual.

So maybe I’m weird and so are my folks, but these memories inform my take on the chatter in the blogosphere and on MEDLIB-L about this post by Harvard PhD student Anna Kushnir in which she expresses her frustration with PubMed. Kushnir writes (in part):

“I hate PubMed. I hate it with a burning passion. For a site that is as vital to scientific progress as PubMed is, their search engine is shamefully bad. It’s embarrassingly, frustratingly, painfully bad.”

[...]

“Why is PubMed so behind the times? Why? How does it even work? Does it search only the abstract? Does it also search the body of the papers that are available online? Why does it get so massively confused by an author’s initials and last name together, in one search? Why can’t it alert me when papers relevant to my work are published?”

I’m the first to admit that PubMed has problems and much room for enhancement, but if Kushnir had bothered to look at PubMed’s help manual or try some of its excellent tutorials she’d have learned exactly how it works, what PubMed indexes, how she can search by author, and that it can alert the user when papers relevant to her work are published via email or RSS.

So while PubMed has real, legitimate problems, Kushnir’s complaints don’t really touch on any of them. She could’ve resolved the problems she notes by flipping through the well-written, clearly laid-out, easy-to-navigate manual.

A number of helpful people who are much nicer than I am left useful comments for Kushnir.

Medical librarian Kathleen Crea offered a clear explanation of how articles are indexed and what MeSH is.

Medical librarian Rachel Walden even offered to help remotely with specific searches if Kushnir didn’t have a Harvard medical librarian handy.

But Kushnir decided that none of this really helped and later commented:

I don’t think I should have to be, or enlist the services of, a medical librarian in order to do a simple search on a literature search engine. PubMed should be an intuitive search engine such as Google, or others. I don’t know of many researchers, either MDs or PhDs, who have had extensive training in computer science or search algorithms. I am going to go out on a limb and say that I am representative of many other biomedical researchers in my struggles with PubMed. I am trained in Cell Biology and Virology. PubMed should be tuned to my needs and my skill set. I should not have to tune to it. Harsh as it may sound, PubMed is most useful for biomedical professionals, not for medical librarians or for computer scientists. Yes, if I devoted an afternoon or more to learning the system I dare say I would become a proficient, but my question stands – why should I have to?

Huh.

The index of biomedical literature searched from PubMed is a vast and complex set of data. Any tool that will search it effectively for very specific needs will necessarily be complex. If Ms. Kushnir doubts this, perhaps she should perhaps try any other interface for the same data. Some other interfaces work better for some purposes and some users, but all are complex.

Using PubMed does not require “extensive training in computer science or search algorithms,” it requires reading the manual. Kushnir actually admits that if she “devoted an afternoon or more to learning the system” she would “become a proficient,” and yet she fails to recognize her complaints as the whining they are.

Kushnir writes at JOVE:

My rant somehow wound up on a medical librarian listserv and they came out in force defending NCBI and PubMed, listing pages and pages of helpful and warm instructions and hints on how to make it do what I need it to do, pages of suggestions, with offers of hands-on assistance and training, which have all been wonderful. Occasionally though, they were biting and harsh, saying that if I only knew what I was doing (and only if I weren’t so ignorant… yup, ignorant), PubMed would seem to me the greatest thing ever.

I’m not criticizing Kushnir’s ignorance and would take issue with those who did. Ignorance, once identified, should alert the librarian to a teaching opportunity- not an occasion for shaming. Criticizing the extraordinary laziness in her refusal to receive help from a librarian or to take a quick look at the manual, though? That’s fair game.

Kushnir continues:

I am a research scientist by long, hard training. I am a fairly web-savvy research scientist, and still, I have trouble with PubMed.

As a medical librarian friend recently pointed out to me, it requires instruction to learn to drive a car. Kushnir is unwilling to read the manual and wants to blame PubMed/NLM for her difficulties. Kushnir talks about having spent hours trying to get PubMed to do what she wants, but declines help from multiple medical librarians who’re happy to teach her and can’t be bothered to invest 30 minutes in reading from the manual because it should, in her thinking, be possible to do without any effort on her part.

Kushnir continues:

The search engine is not made for medical librarians. It’s not made for computer programmers. It’s made for scientists, to be used by scientists, needed most by scientists.

Actually, Medline’s history is that it was made primarily for medical librarians and secondarily for physicians, but that’s not really important.

It should be easy for scientists, goofy, only moderately-computer literate scientists, to use. It should be intuitive (read: Google), it should not have a ginormous page of inscrutable instructions, it should not require the hour-long training sessions, kindly offered at most medical libraries. It should be plug and chug.

I might just as well argue that the tools of virology research should be intuitive to me. After all, I’m a very computer-literate, Web-savvy biomedical information professional. Why should I need her years of training to understand her work?Hint: Because the work is complex and involves a skill set that grows (with effort) over time.

“Inscrutable?”
Kushnir also describes PubMed’s help documentation as “inscrutable.” When I was teaching myself how to use PubMed, I found the documentation clear and helpful, so this surprised me. I decided to run the PubMed Quick Start document through Google Docs’ analysis:

Let’s review these scores:

Flesch Reading Ease: 62.97
(A score from 60-69 is considered “standard”)

Flesch-Kincaid Grade Level: 5.00
(Fifth grade)

Automated Readability Index: 5.00
(Again, fifth grade)

So it would appear that the help documentation is written at a fifth-grade level. I find it hard to believe that a PhD student at Harvard cannot read at a fifth-grade level, so I’m left with the impression that Ms. Kushnir didn’t actually attempt to read any of the documentation before declaring it “inscrutable.”

Suggestions for Ms. Kushnir and other research scientists who don’t like reading the instructions:

So the tool is necessarily complex because the data it searches is complex and the user refuses to read the well-written help documentation or accept help from a friendly librarian (even when multiple librarians are reaching out across thousands of physical miles of distance and the gulf of the patron’s unwillingness to learn).

I can only conclude that sometimes the user *is* broken.See Karen Schneider’s excellent post, “The User is Not Broken”.

Thank you to the two medical librarian friends who read the first draft of this post and offered comments.

Mar 29

Microsoft Vision of our Healthcare Future

Again, not new- but new to me:

The ubiquitous computing concepts shown in the video make someone like me drool. It would seem that the future is flat, rectilinear, and white with pastel accentsI’m married to a design historian, I can’t help it. Sorry..

Still, do you see anything in this video that really strikes you as revolutionary for healthcare …or is it all just really cool-looking?

Mar 28

Introduction to the Cochrane Collaboration (Slidecast)

Flash SlideCast embedded above. If you are reading this in an aggregator, you may need to visit the site to view/hear the SlideCast.

Okay, not the most engaging way to introduce the Cochrane Collaboration- but still neat.

For another introduction, see this video.

Mar 28

Sauers on “media equity” and “library reciprocity”

I so enjoyed how he spoke about these issues on Uncontrolled Vocabulary the other night that I asked Michael Sauers to blog about them…and he did!

Excerpt:

Why do so many libraries insist on treating their public-access computers differently from every other type of media in the building. Think about it, anyone can come in off the street, whether they live in your town or not, pay taxes to your library or not, pull any book of the shelf sit down and read it. For audio if they’ve got a portable player with them they can do the same with CDs and/or tapes. But when it comes to the computers so many libraries require some sort of ID. Maybe a library card, maybe a driver’s license.

Why do we have to show ID to get a library card? Well, it’s not to track the patron, it’s to track the materials that they patron will be removing from the library. If they don’t return the item, we want to be able to track it down. Using materials in the library however required no ID, nor should it, ever! But when it comes to those darn computers, we require ID left and right.

Thanks to Greg Schwartz and the UV regulars for letting me join in- it was fun! Also: apologies to Mary Chimato for not having tuned in sooner.

Mar 28

WikiDoc

Added to the List of Medical Wikis:

Wiki Doc

Self-description: “WikiDoc is intended to be a shared resource for housestaff (in preparation for morning report), medical students (in preparation for morning rounds) and fellows (in preparation for conferences). Nurses and attending physicians may find it valuable to share and improve upon their fund of general medical knowledge.”
Intended Audience/Users: “housestaff…medical students…fellows…Nurses and attending physicians.”
Contributors: “Editors-in-chief” (who appear to be in charge of single pages or sections) must apply and be approved, but “[y]ou don’t need to be Editor-In-Chief to add or edit content to WikiDoc. You can begin to add to or edit text on this WikiDoc page by clicking on the edit button…” Anyone who registers can edit information on this Wiki.
Editors/Administrators: Listed editorial board. Editor-in-Chief is C. Michael Gibson, M.S.,M.D., Harvard Medical School, Boston MA, USA
Editorial Policies: None listed (aside from disclaimer)
Additional notes: Wiki has a lot of pages on prescription drugs filled with content lifted (with attribution) from the NLM…but these pages are not locked- they can be edited by anyone who registers.

Mar 26

Medication Warnings to Physicians Via E-Mail

The not-for-profit iHealth Alliance, a not-for-profit group operated by the for-profit company Medem, plans to launch a Web site that will e-mail physicians to notify them of significant label changes, warnings and recalls related to medications, the Wall Street Journal reports. Currently, physicians receive most notifications by regular mail.

Pharmaceutical companies will pay to use the Health Care Notification Network, which will not include any marketing materials from the companies and will provide access at no cost for physicians who participate.

More about hcnn.net in their FAQ.

Resource Shelf asks: “Perhaps libraries/librarians will also be able to use this service?”

It doesn’t appear that librarians are eligible to sign up. Required registration fields include “Year Graduated from Medical School” and the form will not submit without information in the License Information fields.

That’s unfortunate. I’m certain that our hospital’s library, pharmacy, and patient safety experts would have liked to receive updates from this service.

I don’t understand why such a service even requires registration. What can’t it have a single RSS feed for all alerts for anyone who wants it?

Via iHealthbeat and ResourceShelf

Mar 26

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:


&#60a href="http://liswiki.org/wiki/Medlib_Blogs"&#62
&#60img src="http://tinyurl.com/y32hh8/"&#62&#60/a&#62

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. :)

Mar 25

Online Tool for Estimating Osteoporosis Risk

The World Health Organization has an online Fracture Risk Assessment Tool.

The FRAXTM tool has been developed by WHO to evaluate fracture risk of patients. It is based on individual patient models that integrate the risks associated with clinical risk factors as well as bone mineral density (BMD) at the femoral neck.

The FRAXTM models have been developed from studying population-based cohorts from Europe, North America, Asia and Australia. In their most sophisticated form, the FRAXTM tool is computer-driven and is available on this site. Several simplified paper versions, based on the number of risk factors are also available, and can be downloaded for office use.

The FRAXTM algorithms give the 10-year probability of fracture. The output is a 10-year probability of hip fracture and the 10-year probability of a major osteoporotic fracture (clinical spine, forearm, hip or shoulder fracture).

This is a beta version

[Via the Preston Medical Library]

Mar 24

Web Geekery in Recent Literature, 3/24/2008

Wikis in HIM education:

Perspect Health Inf Manag. 2008 Jan 30;5:1. (Free full text: HTML | PDF)
Using wiki in an online record documentation systems course.
Harris ST, Zeng X.

College of Allied Health Sciences at East Carolina University in Greenville, NC, USA.

We report a case study using a wiki tool, Confluence, including a brief history, current status, and motivations for using Confluence. We describe how we created two spaces on Confluence for two consecutive classes, 2006 and 2007, in a health information management baccalaureate online course, Record Documentation Systems. The 2006 class contained 12 groups consisting of 52 students. The 2007 class contained six groups consisting of 30 students. We describe how two collaborative pages for each of the groups are created and used by the groups for the group project. Survey results illustrated that 44 percent of the students in 2006 and 50 percent in 2007 agree Confluence is a tool for facilitating learning; 58 percent in 2006 and 50 percent in 2007 agree it is a tool for student activities; 52 percent in 2006 and 36 percent in 2007 agree it is a medium for reflective group interaction; and 38 percent in 2006 and 36 percent in 2007 want to see its application in other courses.

PMID: 18311325

____________________________________

J Altern Complement Med. 2007 Nov;13(9):1035-43.
Evaluation of internet websites marketing herbal weight-loss supplements to consumers.
Jordan MA, Haywood T.

Midwestern University, College of Pharmacy-Glendale, Glendale, AZ 85308, USA. mjorda@midwestern.edu

OBJECTIVE: The aim of this study was to evaluate the quality and quantity of drug information available to consumers on Internet websites marketing herbal weight-loss dietary supplements in the United States. METHODS: We conducted an Internet search using the search engines Yahoo and Google and the keywords “herbal weight loss.” Website content was evaluated for the presence of active/inactive ingredient names and strengths and other Food and Drug Administration (FDA) labeling requirements. Information related to drug safety for the most common herbal ingredients in the products evaluated was compared against standard herbal drug information references. RESULTS: Thirty-two (32) websites were evaluated for labeling requirements and safety information. All sites listed an FDA disclaimer statement and most sites (84.4%) listed active ingredients, although few listed strengths or inactive ingredients. Based on the drug information for the most common ingredients found in the weight-loss dietary supplements evaluated, potential contraindications for cardiovascular conditions, pregnancy/nursing, and high blood pressure were listed most frequently (73%, 65.5%, and 37%, respectively), whereas few websites listed potential drug interactions or adverse reactions. CONCLUSIONS: Potential hazards posed by dietary supplements may not be accurately, if at all, represented on Internet websites selling these products. Since consumers may not approach their physicians or pharmacists for information regarding use of dietary supplements in weight loss, it becomes necessary for health care providers to actively engage their patients in open discussion regarding the use, benefits, and hazards of dietary supplements.

PMID: 18047451

So…the potential hazards of dietary supplements are often not well explained by the Web sites selling them? I am shocked, I tell you. Shocked.

____________________________________

Imagine trying to conduct user needs assessments for the NIH/NLM Web sites

J Med Internet Res. 2008 Feb 15;10(1):e4. [Free full text]
Web evaluation at the US National Institutes of Health: use of the American Customer Satisfaction Index online customer survey.
Wood FB, Siegel ER, Feldman S, Love CB, Rodrigues D, Malamud M, Lagana M, Crafts J.

National Library of Medicine, National Institutes of Health, US Department of Health and Human Services, Bethesda, MD 20894, USA. fredwood@mail.nih.gov

BACKGROUND: The National Institutes of Health (NIH), US Department of Health and Human Services (HHS), realized the need to better understand its Web users in order to help assure that websites are user friendly and well designed for effective information dissemination. A trans-NIH group proposed a trans-NIH project to implement an online customer survey, known as the American Customer Satisfaction Index (ACSI) survey, on a large number of NIH websites-the first “enterprise-wide” ACSI application, and probably the largest enterprise Web evaluation of any kind, in the US government. The proposal was funded by the NIH Evaluation Set-Aside Program for two years at a cost of US $1.5 million (US $1.275 million for survey licenses for 60 websites at US $18000 per website; US $225,000 for a project evaluation contractor). OBJECTIVE: The overall project objectives were to assess the value added to the participating NIH websites of using the ACSI online survey, identify any NIH-wide benefits (and limitations) of the ACSI, ascertain any new understanding about the NIH Web presence based on ACSI survey results, and evaluate the effectiveness of a trans-NIH approach to Web evaluation. This was not an experimental study and was not intended to evaluate the ACSI survey methodology, per se, or the impacts of its use on customer satisfaction with NIH websites. METHODS: The evaluation methodology included baseline pre-project websites profiles; before and after email surveys of participating website teams; interviews with a representative cross-section of website staff; observations of debriefing meetings with website teams; observations at quarterly trans-NIH Web staff meetings and biweekly trans-NIH leadership team meetings; and review and analysis of secondary data. RESULTS: Of the original 60 NIH websites signed up, 55 implemented the ACSI survey, 42 generated sufficient data for formal reporting of survey results for their sites, and 51 completed the final project survey. A broad cross-section of websites participated, and a majority reported significant benefits and new knowledge gained from the ACSI survey results. NIH websites as a group scored consistently higher on overall customer satisfaction relative to US government-wide and private sector benchmarks. CONCLUSIONS: Overall, the enterprise-wide experiment was successful. On the level of individual websites, the project confirmed the value of online customer surveys as a Web evaluation method. The evaluation results indicated that successful use of the ACSI, whether site-by-site or enterprise-wide, depends in large part on strong staff and management support and adequate funding and time for the use of such evaluative methods. In the age of Web-based e-government, a broad commitment to Web evaluation may well be needed. This commitment would help assure that the potential of the Web and other information technologies to improve customer and citizen satisfaction is fully realized.

PMID: 18276580

____________________________________

Contemp Clin Trials. 2008 Feb 7
Using the Internet to search for cancer clinical trials: A comparative audit of clinical trial search tools.
Atkinson NL, Saperstein SL, Massett HA, Leonard CR, Grama L, Manrow R.

Department of Public and Community Health, University of Maryland, College Park, MD, USA.

Advancing the clinical trial research process to improve cancer treatment necessitates helping people with cancer identify and enroll in studies, and researchers are using the power of the Internet to facilitate this process. This study used a content analysis of online cancer clinical trial search tools to understand what people with cancer might encounter. The content analysis revealed that clinical trial search tools were easy to identify using a popular search engine, but their functionality and content varied greatly. Most required that users be fairly knowledgeable about their medical condition and sophisticated in their web navigation skills. The ability to search by a specific health condition or type of cancer was the most common search strategy. The more complex tools required that users input detailed information about their personal medical history and have knowledge of specific clinical trial terminology. Search tools, however, only occasionally advised users to consult their doctors regarding clinical trial decision-making. This, along with the complexity of the tools suggests that online search tools may not adequately facilitate the clinical trial recruitment process. Findings from this analysis can be used as a framework from which to systematically examine actual consumer experience with online clinical trial search tools.

PMID: 18346942

____________________________________

Health Promot Pract. 2008 Jan;9(1):59-67. Epub 2007 Aug 28.
An evaluation of community health center adoption of online health information.
Martinez MA, Kind T, Pezo E, Pomerantz KL.

Minnesota Department of Human Services, St. Paul, Minnesota 55164-0986, USA. meredith.martinez@state.mn.us

Health care providers and patients in community health centers often lack access to online scientific and patient education resources. These resources can improve medical decision making and promote communication between provider and patient. In 2000, a community health information program, Partners for Health Information, provided 10 community health centers in Washington, D.C. with computers, training, and consumer health resources, supplemented with visits to coach patients and staff in their use. The purpose of this study is to assess the adoption of the use of online health information among staff in seven of these health centers. The methods of this evaluation were designed to measure frequency of patient referral by health center staff to online health information and to describe providers’ perceptions of the barriers and enablers to using online resources. Recommendations made by respondents can be used to modify the Partners program and guide the development of other similar programs.

PMID: 17728203

____________________________________

Healthc Q. 2008;11(1):104-8, 110, 4.
Web 2.0 and chronic illness: new horizons, new opportunities. [Free full text]
Seeman N.

IBM’s Global Buisness Services, Toronto. neil@ca.ibm.com

“Web 2.0″ heralds a breakthrough opportunity for empowering healthcare consumers of all types, and especially for those suffering from different forms of chronic illness. As the author shows using some data gathered from a popular social networking website–MySpace.com–this opportunity may be greatest for heavily stigmatized chronic health issues, such as obesity and mental illness.

PMID: 18326388

Mar 22

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

Mar 22

Wired on iPhone for Physicians

Proof of how far behind I am on my reading: I just now noticed this article from Wired.

A Tech Rx for Doctors: The iPhone

“Whether it’s new imaging apps or a database of patient information, ultimately, the same concerns that businesses have expressed about the iPhone will be the ones that hospital IT departments will bring up. Is it secure enough? Can hospitals guarantee patient privacy when data is being stored or accessed on iPhones? And can the popular handset stand up to the rigorous demands of a busy hospital environment?”

Mar 21

(Greatly improved) Cochrane and CINAHL Tutorial Videos

The Cochrane tutorial video I posted a few days ago from YouTube was good in its content, but the quality of the image left something to be desired.

James Carson, the reference/acquisitions librarian at Lake-Sumter Community College who put the tutorial together was kind to contact me and point me towards the much higher quality version.

If you like that, be sure to check out their CINAHL tutorial as well.

Thanks, James!

Mar 20

Explain RSS using Facebook

In the middle of an attempt to explain RSS to a Facebook user (who is already uniwittingly making use of RSS feeds), this exchange cracked me up:

the_dude: I haven’t heard of those Facebook apps. Tumblr? Reddit? Digg?

engtech: Those aren’t Facebook apps. They’re different websites. You don’t have to login to Facebook to read them. They’re out there in the great wilds of the Internet. They’re outside of Facebook.

the_dude: Man, internet people are horrible spellers. What’s up with those website names?

engtech: Web 2.0 means spell check is optional.

http://internetducttape.com/2008/02/28/explain-rss-using-facebook/

Mar 20

EBLIP4 Keynote 5-9-07 Booth Plutchak Debate (Video)

Journal of the Medical Library Association and health sciences library director and Andrew Booth, a leader in EBLIP from the U.K., discuss whether the model of evidence based practice as it has evolved in other fields such as health sciences can be applied to the field of library and information science. Plutchak questions whether the “big questions” in the LIS field can ever be address by the currently available models and Booth counters with arguments in the affirmative. The speakers use the characteristic humor of the classical debating format to make their points.

Mar 19

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 practicalMark 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)., 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.

Mar 18

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?
Mar 16

Moving and/or Shaking [updated]

(The title of this post was going to be “Ambulatory and with Tremors,” but figured I’d be the only one amused by it.)

So Library Journal named me one of their 2008 Movers & Shakers.

(I’m curious: Are those named in this annual list all people who either move OR shake or people who both move AND shake? If the former, am I a mover or a shaker?)

Library Journal’s navigation makes it impossible to browse the profiles by name, so Jessamyn West sensibly made a version of the list with names.

Thank you to Melissa Rethlefsen for nominating me!

_________

UPDATE:
Bobbi Newman has borrowed Jessmyn’s list and added links to the blogs of 2008 Movers & Shakers. Interesting how many of them have blogs, isn’t it?

Mar 14

Emerging Technologies in Nursing and Nursing Education (Presentation)

Patricia Anderson (whose slides I always find worth a look) put up a new presentation yesterday:


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