Wednesday, December 31, 2008
Benjamin Ward Towne
July 17, 2005 - December 30, 2008
One look at this sweet young tennis player's face & dates and you'll understand why my heart is broken at the end of 2008. Ben was diagnosed with neuroblastoma in August 2007 the same week one of my lifelong friends should have died from what CT scans showed as a fatal arteriovenous malformation (AVM) hemorrhage. Ben's scans showed no cancer this summer, a very aggressive return in October, then he entered hospice care with supposedly days to live on November 3rd.
Ben was the son of our pastor who officiated at our wedding almost 9 years ago. I did everything I could to stand alongside Jeff and his family as he did at the beginning of our own family, from morale support through regular posting on Ben's CaringBridge website to offering any research assistance possible as a medical librarian.
That included letting them know about the launch of Children & Clinical Studies this year although they were already well into a Year 5 study at that point since Ben's neuroblastoma didn't respond to chemotherapy.
I hope that MedlinePlus will update their Clinical Trial links both at the neuroblastoma website and elsewhere in topics relevant to disease in children with this valuable resource. I am certain most parents would not think to do an additional search beyond the main ClinicalTrials website yet it's needed to understand the importance of research in children, how to get started in a study, what happens once their children are in one and resources available to them. Children are not little adults. They are unique. I could not agree with the American Academy of Pediatrics' President, Dr. Renee Jenkins, more.
I will not say Ben lost his battle to cancer for that puts too much focus on a disease that did not remotely define who he was. Ben lived his life, short as it was, with so much enthusiasm that he literally touched the world. It is with profound gratitude that I thank the people in Texas who made a difference by being able to get Roger Federer, James Blake and Andy Roddick to all personally connect with Ben and bring joy to his final days. He didn't live long enough to receive his wish from Make-A-Wish but this was close!
What can you do to make a difference in 2009? I'll keep researching and writing here and living life to the best of my ability for my contribution, and have a few other specific things up my sleeve that I'm working on. Thank you for being part of the journey this year & all best wishes for health and peace in 2009!
Friday, December 26, 2008
Yours truly, Christmas Day 2008, Seattle
Trying to move an ice boulder that was dumped at the end of our driveway by a snowplow isn't exactly what I planned on doing to celebrate Christmas, but so it goes.
Nearly every family tradition we've carefully kept through the years (going to church, visiting the zoo, eating Chinese food on our wedding china, a Christmas roll for breakfast made from a hot roll mix not available at the grocery store we were able to access, taking a ferry & long drive to be with our family on the Olympic Peninsula, etc.) was tossed along with repeated shovelfuls of snow this week. Our inability to travel on increasing amounts of slush & ice, our city's debate over the most environmentally aware way to get rid of them, and repeatedly clearing an unusually long driveway has made this week feel more like a bad rendition of Groundhog Day than a time of peace and joy.
Our house flooded last December due to heavy rainfall on snow, so today's flood watch has us more than a little anxious this morning. Previously we were told this storm wouldn't be too heavy but it sounds like all bets are off now.
Thankfully, our six year old son always made the best of every moment through it all. He is amazing and I'm trying to learn from him.
Friday, December 19, 2008
This blog is still the first Google result for Quizno's I fear change commerical from my April 2008 post. I still love the 'I fear change and will keep my bushes!' reaction to pants, it is often on my mind when I come across resistance to change now. I hadn't reread the post for a while, but my thoughts there are relevant once more when it comes to these current changes in PubMed:
Resistance to change, however, is an undeniable part of human nature that is most successfully overcome through extreme patience, persistence and education in conjunction with assessing user information needs (before, during & after) to determine the proposed changes will/are actually work(ing).
From my very limited time in the field I've observed that many medical librarians have persistence bordering on the obsessive (I'm guilty of this), a very large amount of patience for our patrons, not quite so much patience for one another, and little to no patience when it comes to the electronic tools of our trade not looking or working the way we have come to expect & rely upon them to be. Show of hands for those who pitched a fit when Delicious changed overnight this July, for example? How about the new Facebook profile layout during the same timeframe?
These social bookmarking and networking sites aren't even close to the heart of medical librarianship online tools; PubMed is the core and it has had a number of changes that directly affect our search results and the navigability of the database. No wonder there is so much chatter on MEDLIB-L and other venues about it!
We have come a long way in 11 years though. There once was a cost per query ranging from $2-$4 depending upon the amount of information retrieved and time it took to do so by using Grateful Med to interface with the MEDical Literature Analysis and Retrieval System (MEDLARS) databases. (source) The title (bold mine) of the article reflects the time: Sikorski R, Peters R. Medical literature made easy. Querying databases on the internet. JAMA. 1997 Mar 26;277(12):959-60. I don't think any of us would consider that 'made easy' with our expectations regarding PubMed today, free full text wasn't an option!
What of the role of education in these changes? I already mentioned how, from my perspective, the Discovery Initiative background behind the changes in PubMed wasn't communicated clearly. Medical librarians frequently serve as educators for our users and our webpage tutorials, Camtasia recordings and classes about PubMed have already needed revision regarding the automatic term mapping (ATM), and will again where tabs are concerned per the PubMed Technical Bulletin on November 14, 2008
PubMed Advanced Search will soon no longer be a beta site. It is now the place to go to use features such as field searching and limits. In the near future the tabs for Limits, Preview/Index, History, Clipboard, and Details will be removed from the basic PubMed pages. History, Limits, Index of Fields, and a link to Details are available from the Advanced Search screen.What about needs assessment? Changes have been and will continue to be made based on the data gathered from over 3 million searches a day, but I don't know the answer to what the results are from PubMed's needs assessment or usability testing studies. Direct feedback from users is a closed loop: web forms and emails are submitted but we as users do not know what happens next from what we send in although we are encouraged to do so. Sometimes we receive a response back that doesn't seem to address what we said, sometimes we receive no response at all.
It may be too radical and soon to cast an eye to some of the Web 2.0 tactics of transparency in change the upcoming administration is utilizing on the web for feedback, such as the first popular Open for Questions. 10,000 questions posted by change.gov visitors were ranked up or down one million times by over 20,000 people and some of the most popular ones received a direct answer for all to see. How could something similar be used to transparently offer a communication and feedback venue about what is important to all PubMed users, not solely medical librarians but all of the multiple populations that use it?
We've all grown up with it, and many of us say this to the youngest generation now as most of the United States has been encountering an Arctic blast of cold wintry weather:
Don't go outside without your hat on, you'll lose most of your heat!The response of recent researchers claiming this is a myth?
Oh dear. I have visions of defiant mini streakers in the snow with hats on...
Humans would be just as cold if they went without trousers as if they went without a hat.
Additional features of the Six Homespun Medical Myths Debunked include
- Holiday sweets don't make the kids more hyperactive.
- Suicides don't go up over the holidays.
- Poinsettias aren't poisonous.
- Avoiding eating at night won't keep the pounds off.
- The only way to cure a hangover is not to get one in the first place.
Friday, December 12, 2008
I think you'd have to be on a serious research mission to put up with the post-9/11 level of security required to actually get in the National Library of Medicine to use their Reading Room, but it is still possible. You can request up to 50 articles per day from their stacks with your own library card, complete with a warning on the back that
It is a violation of Federal Law and punishable by fine and/or imprisonment to steal of willfully damage or destroy Library Books or other Library property.Here is information about how to receive your own NLM library card when you visit. It was suggested to us as a personalized souvenir opportunity by our NLM tour guide, so please go ahead. It's fun and takes 5 minutes! The machine that churns the cards out now doesn't look like the one in the video at all. It's much more compact and makes a lot of funky noises before it finally spits out this card with your minimized electronic signature & mug shot on it. At the bottom of the webpage is a map; the computers for the first step are in the Online Catalogs section then you head to the Patron Registration Desk to process the card.
Be sure to head over to the History of Medicine Reading Room and peer in at their Incunabula (texts made with movable type before 1501). I do not have synesthesia, but if I did the word Incunabula is one of the closest ones to trigger a response in me to it. Outside the Incunabula (last time, I promise) they had the book with the mandrake illustration in it from 1491!
Thursday, December 11, 2008
NCBI: Discovery Initiative.
When you hear about the National Library of Medicine (NLM), what do you think of? For most of us the PubMed database is probably at the top of the list. However, PubMed is a very far cry from all the biomedical information resources that NLM encompasses. PubMed is the default at the top of the Databases box on that Entrez page, but have you seen this Entrez cross-database search that gives a brief annotation about the other NLM databases? Try out your favorite medical subject in the cross-database search box and see how it displays the results. It's a nice way to see what might be relevant in these other databases, right?
Nobody knows about the cross-database search (not exactly a catchy name) and the entire research world knows about PubMed though. Leading the creators of the 3+ million searches per day of PubMed to explore these other databases that may be of great value to their medical research yet are completely unknown to them is the driving factor behind what is referred to as the 'Discovery Initiative' of the National Center for Biotechnology Information (NCBI), which is part of NLM.
Most of this work has been done quietly behind the scenes since the summer of 2005, preparing the backend infrastructure to handle this increased connectivity among the databases according to a Bio-IT World news article from January 30, 2006. In a Bio-IT interview published on February 1, 2006, Dr. David Lipman, NCBI Director, explains this concept further
They're trying to make PubMed like GOOGLE?!
I call it the Discovery Initiative. It’s something new. It’s been percolating. Last summer, I went out to visit Google and Amazon’s A9 [search engine] and the folks from Microsoft’s MSN came to visit. I also went up to Boston to meet with folks from the major hospitals there and MIT and Harvard. We’ve really been giving this a lot of thought. In many ways, we have had great success. Lots of people use the site and 2.25 terabytes of data are downloaded from our site everyday. And yet I find it very frustrating because we’ve connected up the scientific information in very precise and powerful ways: a protein structure to the chemical it’s bound to, to genetic data, you name it. All that is connected up. And yet very few of our users do more than very simple things with our site. It’s as if [they say], “That’s enough, I found the answer I’m looking for and I’m done.” We want them to find answers to questions they didn’t even know they had.
Not really. PubMed will never recommend you go check out WebMD & someone who has a website about a rare disease just because they have the same keywords in their metadata. Think along the lines of the suggested products when you're shopping at Amazon.com. If you're searching for information about genetics in PubMed, in the future you probably will receive the 'But WAIT! There's MORE!' blurb about Gene, NLM's database of genes. From Dr. Lipman's February 1st interview,
The bottom line for us is discovery. We want people to make discoveries, and if we’re using up real estate on the Web page for things people don’t click on, and if we can put things on there that would have been associated information, then we should do that.and
It marks a change in perspective and philosophy that will lead to constant changes in the system [in coming years].Where was this Discovery Initiative announced to the medical library community and discussed?
The National Network of Libraries of Medicine, Middle Atlantic Region (NN/LM MAR) blog entry on February 7, 2006 cites the Bio-IT article as "the official word about the new NCBI Initiative." The October 2006 minutes of the PubMed Central National Advisory Committee note Dr. Lipman referring to the Discovery Initiative as "one of the most important projects NLM is working on." I encourage you to go to the source article for additional comments and insights about it from the committee.
There are additional brief mentions in the May-June 2007 NIH Catalyst (for NIH intramural scientists), and an NIH advertising feature in Nature from 2007, and the Nature citation was mentioned by someone in the comments to the Anna Kushnir incident on March 22, 2008. Other than these scattered bits of information, I can't find anything else. NLM Technical Bulletin has no mention of 'Discovery Initiative', MEDLIB-L has no mention of 'Discovery Initiative', and MEDLIB-L posts including either 'PubMed' or 'NCBI' around the same time as the Bio-IT & MAR blog posts don't appear to discuss it either. If you're aware of other sources that do discuss the NCBI Discovery Initiative, please post a comment and I will gladly edit my post to include them.
Why am I hearing about this from you almost 3 years later?
The changes you are now and will continue to see in PubMed are a result of the Discovery Initiative, which I heard mentioned for the first time during NLM orientation last week. I made a note of that term to research it further since I am new not only to my job but the field of medical librarianship. I thought I didn't know about something everyone else already did.
In my opinion, the existence and ramifications of NCBI's Discovery Initiative weren't communicated as clearly or as widely as they needed to be to the medical library community in 2006. It still isn't being mentioned as the reason behind the changes that are now rolling out at the front end of PubMed (remember my first shoutout about this back in May and my guide to the Chicago presentation in June?) and will continue to do so for a while. I am but one humble blogger, but believe that the more the history, background and reasons behind change are explained, discussed and understood, the better the outcome of the change is for everyone.
A tip: Start using Advanced Search now if you haven't already, the tabs are becoming obsolete for updates and are probably on their way out next year.
The old "tab" version of Limits will not be updated. Future changes will be made only to the limit feature on the Advanced Search screen.(December 5, 2008 NLM Technical Bulletin, which I really wish wouldn't be referred to as the TB. I like Tech Bull since I'm a moderately geeky Taurus!)
If you are not already subscribed to the NLM Technical Bulletin, I definitely recommend it to know what's on the horizon.
I'll have more reflections on this, communication, and medical librarianship work culture in a post next week and encourage you to share and participate from your perspective. What do you think about this?
Wednesday, December 10, 2008
People understand their own moral principles, usually intuitively and without much question. When serious disaster or disruption occurs and the world as we know it changes drastically, we learn that the way we see the world, the way we perceive cause and effect, and the way we evaluate our choices are not necessarily shared by others, even by loved ones or close coworkers. But if we discuss the principles behind our world views before catastrophe strikes, we can be better planners and decision-makers during crisis situations.
Slides are located here, and an archived session recording (1 hour) here.
Dr. Harvey Kayman, who became a public health officer after 25 years in pediatrics and 14 years as chief patient educator of the Fremont clinic at Kaiser Permanente, was a very effective and responsive web conference presenter. Many webcasters do not handle audience questions consisting of both audio and text well but he strove for inclusiveness. I highly encourage listening to the recording for a wealth of information beyond the slides and am looking forward to the second webconference in March 2009.
Sunday, December 7, 2008
I'm a fan of the security process (no fences, no guards who wand you spreadeagled in front of your colleagues after your watch sets off the metal detector, just fly on in!) and perpetual Spring at the Virtual National Library of Medicine (Virtual NLM) in Second Life (SL) compared to the real life deal in Bethesda, MD.
The Virtual NLM seats in a completely empty auditorium, yet they still won't allow you sit down on them? Not so much.
During my recent orientation at NLM (the real deal), Second Life was mentioned more than a few times so I came over to check things out. I freely admit I have no clue how to do much except basic navigation in Second Life since I've logged on to it maybe 4 times, but can envision this as a great distance education platform to go well beyond PowerPoint & web pages. Since Adobe Connect functionality is pushing it for some rural/lower income areas I know SL's massive memory consumption & connectivity speed requirements are major barriers for the time being though.
I will share more information about my time at NLM, including some blurbs about PubMed and cool new things in production now, during the week. Stay tuned!
Friday, December 5, 2008
In PubMed, how many articles were indexed for MEDLINE on your birthday assuming that was a business day from 1966 onward (more on earlier dates soon), not a weekend or holiday, and not during late Nov/December/first few days of January? (more on that at the bottom))
What, how can I do that, you ask?
medline[sb] AND YYYY/MM/DD[mhda]
My son's example of 2,896 articles indexed is
What if you were born in 1949-1965? (MeSH wasn't around before then, sorry)
I did not make this up, it's just fact
oldmedline[sb] AND YYYY/MM/DD
How about for the full year?
medline[sb] AND YYYY:YYYY[mhda]
For 2002 there were 615,062 articles indexed.
Compare that to my birthday (144!) & year (219,614) in the 1970s. I'm not sure if I was born on a slow day or what.
2008 ends with 676,277 articles indexed. What is the deal about nothing being indexed in late November-early January? They're preparing for 2009 MeSH.
Go ahead and make the PubMed staff wonder what the deal is with all these searches coming in! :)
Wednesday, December 3, 2008
I suspect with our current economic climate even more moms will choose health care for their children first and postpone their own due to the expense.Little did I know that there was a survey in progress by the National Women's Health Resource Center (NWHRC, at healthywomen.org) about this very topic that was released yesterday with some sobering news about women and healthcare.
- 45% of the women have failed to seek medical care in the past year (including doctor's visits, recommended medical procedures & medications) because the cost was too high, with Hispanic women more likely (58%) than white (43%) or African-American (42%) women.
- More than 40% reported their health had declined over the past 5 years, mostly due to stress and weight gain.
- Only 42% mentioned feeling prepared to grow older in terms of financial security, with financial (51%), retirement (46%), medical (42%) and health insurance options (41%) given as information needs.
NWHRC has created an online wellness information resource for women in response to the findings of the survey. At a quick glance I'm finding a few broken links in this consumer health resource, but I definitely encourage checking out De-stress the Holidays. It's a bit too late for all the long range planning tips (10 weeks) but there are gems in there that could still be done such as "If certain rituals trigger sadness, change them or create new traditions to replace them."
Wednesday, November 26, 2008
One of my friends alerted me to the fact that both of her sisters are among the workers in a recent local news video magazine feature about their incredibly cool employer, Sawbones.
Bonus: see the staff spirit around 1:15 and 1:59 in the video link?
I had no idea that Vashon Island was cranking out over 4,000 bones a day for the greater medical & orthopedic training needs of the world! To the left is a full skull, yours for $54.75, or without a mandible for $39.00.
Is it so wrong that I want one of these for Christmas to put on my desk?
My thirtysomething husband & I are extremely unusual for our age in that we've had health care power of attorney and advance health care directives written for many years, have cards on us & authorized paperwork with the People's Memorial Association, and even chosen and stood upon our own grave overlooking the Cascade Mountains.
Morbid? Perhaps. Leaving a crystal clear path so that our family doesn't have to guess what to do with us in the middle of their own deep shock & grief? Absolutely. If you don't already know how intensely painful it is to guess at these types of decisions for someone you love who is terminally ill or just died, please take my word for it: talk about these issues now. I can think of no greater blessing than doing what you can to establish peace of mind.
Thank you for your time and be safe over the holidays.
The following post was written by Alexandra Drane and the Engage With Grace team.
We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don’t express our intent or tell our loved ones about it. This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they’ve talked to them about their preferences.
But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking. http://www.engagewithgrace.org was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide - wherever and whenever they can - as a presentation, at dinner, at their book club. Just One Slide, just five questions. Let’s start a global discussion that, until now, most of us haven’t had.
Here is what we are asking you to do: go to http://www.engagewithgrace.org/- download The One Slide - and share it at any opportunity - with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.
Let’s start a viral movement driven by the change we as individuals can effect…and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.
Just One Slide, just one goal. Think of the enormous difference we can make together. To learn more please go to www.engagewithgrace.org. Thanks.
Tuesday, November 25, 2008
Want to bend the future administration's ear about this topic?
...and you don't have to be a doctor like my friend Dora here to participate in our online discussion.Please, go for it!
Reading the Obama-Biden Health Care agenda would probably be a good idea too, especially noting that things may change from what's currently at the bottom of the page:
A Commitment to Fiscal Responsibility: Barack Obama will pay for his $50 - $65 billion health care reform effort by rolling back the Bush tax cuts for Americans earning more than $250,000 per year and retaining the estate tax at its 2009 level.
Here is what the media stated on Nov. 23rd:
Another thing that I hope is that whatever video program is embedded on the Change.gov website is accessible to the deaf and hard of hearing so they receive the message that all are welcome to participate. They'd better be more aware of Section 508 than I am!
In the presidential campaign, Obama focused largely on tax cuts for low-wage and middle-class workers and tax breaks for small businesses. But as part of a stimulus package, his advisers have discussed letting the Bush tax cuts for the wealthiest Americans expire after 2010 as scheduled.
That, in effect, would delay the tax increases that rich taxpayers would have faced had Obama repealed the Bush tax cuts a year or two early, as he had suggested in his campaign.
S. aureus is also known as 'staph', so patients can have either a nasty MRSA infection or a regular old 'staph infection.' I always question how much time clinical staff are being able to spend with their patients to make sure they understand a diagnosis when they email family & friends about their 'staff infections'. I've seen this happen with enough frequency to suspect it isn't a fluke, so I decided to do a little research of my own along these lines.
It absolutely kills me as a medical librarian to admit that Google is on the ball with this common mishap, look what happens when you search for 'staff infection' there:
Google 'knows' you mean staph infection and redirects you accordingly in a fairly straightforward way.
Does consumer health gold standard MedlinePlus? Unfortunately, no. The 6th search result makes the connection only as a pronunciation key:
"... infection that is usually caused by staph (pronounced: staff ) bacteria. What Is a Staph Infection? Staph is the shortened name..." All the other search results on the front page talk about medical staff preventative measures.
WebMD? Their advertisers are but not their resources. All three Yahoo ads mention Staph Infections before a Hepatitis B resource, a video where staph infections are mentioned as a possible tattoo side effect (listed twice in a row), then a MRSA-titled resource that doesn't mention staph or staff but does mention infection in the preview.
One .gov that gets the 'staff infection' search right? Healthfinder.gov! Check it out:
Healthfinder is also making the staff and infection connection but at least pulling a Staph Infection article to the top of the resource list. We know that the Health News article to the right about MRSA screening for health workers would be of interest but someone searching for a 'staff infection' may not.
Google Flu Trends is helping to identify search patterns for that particular topic, what do the data look like for 'staff infection' in addition to MRSA & staph infection?
There is additional subregion data that gives some clues about health literacy needs in certain areas.. but is anyone else thinking and monitoring along these lines?
Monday, November 24, 2008
I could drive myself crazy with the 'what ifs.' Both she and her neighbors did not know that the symptoms of a heart attack for women do not always include pain. She spent the morning resting as the neighbors changed the oil in her car before an afternoon doctor's appointment to check what she thought was pneumonia... just mild chest tightness, feeling winded and fatigue after a cold. No emergency at all, of course. By the time she was seen then immediately sent by ambulance to the emergency room it was too late. She died at the same time I left work for the airport. My grandma didn't call to tell me she was feeling ill in the first place since she didn't want me to worry about her.
In 2004, the American Heart Association launched the Go Red for Women campaign to increase awareness of the fact that heart disease is the #1 killer of women & promote preventative measures for cardiovascular health.
My grandma's hypertension was under control with medication, she ate well, and she either swam laps (she & her high school team often won competitive Pacific Ocean & other swim meets and I have all the pictures & articles about them in the papers) or walked for an hour daily depending on the weather though. It concerns me that Go Red doesn't include well-marked links to information about the actual symptoms of heart disease in women, so here's one from the Mayo Clinic
Women are more likely than men to have signs and symptoms unrelated to chest pain, such as:
- Neck, shoulder, upper back or abdominal discomfort
- Shortness of breath
- Nausea or vomiting
- Lightheadedness or dizziness
- Unusual fatigue
As you're getting together with your family this week for the holidays, take the time to talk with those you love to make sure they're getting the health care they need. I'm taking my own advice too: Take care of yourself first.
I only wish I had a chance to have that talk with my grandma a decade ago. In retrospect, this is probably part of why I'm so passionate about consumer health education now.
Friday, November 21, 2008
Just in case you and your loved ones aren't
Your cousin and his wife know they’re a bit overweight. There’s no need for someone to casually drop hints about how Jessica Alba lost all that baby weight so quickly when they go in for that second helping of pumpkin pie. And, please, steer clear of your balding Uncle Bob who worked so hard to buy that Corvette -- he doesn’t want to be asked if he’s “compensating for something.”
They suggest discussing happy neutral topics such as 'funny characters at work' and 'recent vacations', then 'And when all else fails: puppies!'
I don't think saving the puppies for last is a good strategy. Assuming Grandma or Mom has internet access, why not share the adorable cuteness of the Shiba Inu puppies you've been watching all month instead of doing your work? Just make sure your overweight cousin grabs you some extra pie for running interference on the passive-aggressive comments!
Live TV : Ustream
Monday, November 17, 2008
HEAL-WA was created in response to legislation passed in Washington back in May 2007 and has been a source of a great amount of confusion ever since. Let me clear one up immediately: HEAL-WA access does not equal UW Health Sciences Library access. Are we all on the same page about that? Great!
Even if you aren't among the covered professions who will have access (or even live in the state for that matter) I encourage you to browse the A-Z database list and eBooks sections for any of the free goodies you may not be aware of for your own reference. As of January 1, 2009 access will be restricted to those in the covered professions with a login and password to the site, which will contain many licensed resources. Check it out now while you can!
While not quite as exciting as a lunar meteorite, being invited to research discussions by those who are passionate about their field and how their projects can help people is equally interesting to me. On Friday I was pleased to be able to attend a research conversation with Dr. Kent Unruh, a senior fellow with the Division of Biomedical and Health Informatics at the School of Medicine here at the University of Washington.
This was a reprise of his 2008 American Medical Informatics Association (AMIA) symposium presentation earlier this month of Barriers to Organizing Information during Cancer Care: I don't know how people do it, abstract of
People organize their personal information to conceptualize what they know,
enhance information retrieval in the future, and cue or remember tasks in
everyday life. However, studies also suggest that organizing is difficult and
people fail to use their information effectively for emergent tasks. In the
health-care domain, patients face grave consequences if they cannot access and
use information effectively. Arguably, patients have access to more information
about their health than at any previous point in history. However, information
access is only the first step to managing health care needs. Patients must
organize it effectively to support the underlying tasks required to manage their
health proactively. Ironically, ever-increasing access to information
exacerbates the challenges patients face in using information effectively. In
this paper, we describe five barriers patients encounter when organizing their
information for use during cancer care. We describe each barrier using rich
examples from our triangulated data set, and conclude with four recommendations
to help patients organize information more effectively during active treatment.
I'm not too sure we followed the abstract presentation to the letter, but the implications I came away with for ways to help with information organization for cancer patients were
- Provide a rich intermediate structure (embed pre-organized links to other related information on insurance, necessary customization that is highly personalized)
- Leverage assistance from others (support co-management model, enable assistance from others & organization strategies for their particular situation)
- Provide a functional view of information (integrate descriptive & procedural info (who/what/where/when/who), distinguish information for active tasks, represent patient's view of cancer care system) Discovery of time-sensitive financial info in the stack added significantly to emotional stress, sort information/bills by date due instead of date services given.
- Incorporate emotional considerations (negative feedback loop of not being able to retrieve information when needed for patient involvement in own care)
- What is the role of informatics in cancer care? Clinicians and designers can explore stress reduction techniques, embed cognitive cues & known stress reduction techniques for stress relief in managing information
I also see social networking (such as Facebook pages) as a way to meet the need of being able to "coordinate in common information space between disparate groups" to help out in areas of emotional support, driving to appointments, bringing meals over, helping with childcare and other related activities in a patient's cancer treatment. I'm convinced Facebook is probably already being used this way and I just haven't seen it yet. Blogs are great for sharing cancer diagnosis, treatment and other information with everyone at once and receiving messages of support from loved ones in return but not so much for group coordination from what I've seen, which is sadly way too much.
Friday, November 14, 2008
This is timely in light of a ruckus that broke out on Twitter two days ago. A system called Twitterank asks for your Twitter username & password (while providing a disclaimer) "to determine how worthy of a person you are in Twitterverse." I saw isolated tweets about people & their twitteranks earlier in the day, then by the end of the day saw other people saying it was a phishing scam. Yesterday, the Twitterank author had a say in his defense.
Social network analysis is a real and very complicated process, as I learned in an insanely overpacked conference room in Denver last Saturday. Twitterank and Twitter Grader seem to be stabs in this direction of measuring actors in a network of arcs, trying to determine the geodesic path of least resistance and most influence... or perhaps it's far less complicated and cuts to a core question of humanity that hasn't died since 5th grade: Am I popular?
My Twitterverse answer according to both services: I am still so not popular despite ditching the Coke bottle-thick glasses for gas permeable contacts and having a sharply straight smile after way too many years of braces. That's fine by me.
(Warning: The following is not a political endorsement nor for viewing by those under 19 years of age due to the risk of aging your arteries)
I also have a 22.5 BMI, yet was sent information about Weight Watchers by a former coworker then attacked by the red exercise ball of my colleague this morning. I was beginning to feel self-conscious until another colleague came to the rescue with the ultimate vision of sweet, glorious saturated fat: The Donuts and Bacon '08 T-Shirt advertisement. If this was a button or magnet, I'd be there even as I cringe at the thought of these two wonderful food items together at the same time.
Continuing with last week's theme (no guarantee for next week), here's a free MP3: the Donuts and Bacon song by James William Roy! All the unpopular of the world, sing along with me now...
All us losers and boozers and heroes can't fall
If there's donuts and bacon in the morning!
Saturday, November 8, 2008
I'm tired and I want to go home now, but not before a nice breakfast with my aunt before I catch a plane tomorrow morning.
Lots of great information was shared today (social network analysis, relevant cultural information, distance education evaluation practices that make sense compared to what I endured as a grad student, etc.) I've identified the future need for me to see about modifications in Google Docs to make it easier to skip directly to relevant information, but now is not the time.
For the collective record:
Saturday, November 8th notes
Friday, November 7th notes
Thursday, November 6th notes
Wednesday, November 5th notes
I won't be able to coherently discuss any of this information for quite some time until I'm able to synthesize it a bit!
Friday, November 7, 2008
My favorite line of the conference today is the discussion of the B-HAG, which stands for Big, Hairy Audacious Goal. I love this and think I'll informally begin every program or class project I have in mind with a serious B-HAG brainstorming session before going any further with it. Today I also rescued a presenter from having to verbally describe a website and its functionality because his wireless connection decided to fail. I have a camera phone pic of most of the 30 participants in the room gazing at my laptop but am having issues uploading it. I'll include it in the Google Docs when I can.
Despite third night insanity, I've polished up most of my notes from today (6 sessions) as well as yesterday's and the day before's. Tomorrow should go very well with my scheduled Sanity Break involving shopping and a long lunch!
(Photo credit: success in standardized testing went to his head, by woodleywonderworks
Awareness credit: Gary Minron, Western Michigan University, who played the MP3 for us before a conference session about survey data)
Thursday, November 6, 2008
It was the title statement by the president of the American Evaluation Association during a plenary today that made me think about organization structures. Those in hierarchies both know and execute the flow of authoritative power because it is a controlled factor that also carries an easy amount of blame on 'the system.' I use it myself to describe how things are easily lost in the massive bureaucracies we juggle.
These flows of power don't work the same way in a horizontal organization structure, yet the latter seem to be where most social networking and collaboration occurs. Sharing is not only easy, it thrives here with substantially decreased turnaround expectations compared to the hierarchy. Why is David Rothman apologizing for what really isn't a delay? In my current conference (which is rather un-Web 2.0), the onus is on us to contact presenters via email for copies of presentations. Is part of social networking an acceleration on turnaround time and the expectation that we as creators of knowledge resources will always & immediately share our material online? I'm not certain.
In the nature of sharing, (I saw others with laptops today, yay!) today's conference notes are here containing mostly unedited raw material that I'll turn into at least one lengthy blog post in the future and possibly two. I'm too pooped to put all 5 proper session titles, all the presenter names & affiliations and will edit them later. I need sleep because I have 6 sessions on tap for tomorrow!
Wednesday, November 5, 2008
Then there's me, here at the American Evaluation Association (AEA) conference in Denver, Colorado, where the plenary speaker features a Pushmi-pullyu (she had an uncited one, mine is from the Llama Rescue) in the Powerpoint.
I am distinctive here not because I'm a librarian (although I've yet to run into another one besides my colleague roommate) but because I'm becoming aware of a rather odd factor: with the exception of presenters, no one else is running around with a laptop to take notes. This is particularly odd (to me) in the session sponsored by the graduate student & new evaluator interest group.
If you're involved in library evaluation and assessment you'd probably be interested in some of the sessions. My notes from today are up here. If I can locate outlets I'll hopefully be able to cover each day but there are none alongside walls... maybe in the very back?
There is a very high acronym usage and specialized jargon level I'm completely unfamiliar with here since I've had no prior training in evaluation/assessment beyond logic models. I did manage to explain to someone from the National Institute of Health (NIH) exactly how the National Network of Libraries of Medicine (NN/LM) fits in with the National Library of Medicine (NLM) & talked with the presenter of a poster about the assessment of community foundation grants (including consumer health) who had no idea NN/LM existed & seemed rather excited by it.
Tuesday, November 4, 2008
Rights of the People: Individual Freedom & the Bill of Rights - Ch. 12: The Right to Vote
(Yes, I know this is the updated america.gov source location, but that layout does absolutely nothing for me even though the original one isn't 508 compliant. Sorry.)
Truly inspiring brief quotes and context behind each of the Amendments below.
The right of citizens of the United States to vote shall not
be denied or abridged by the United States or by any state on account of race, color, or previous condition of servitude.
— Fifteenth Amendment to the U.S. Constitution (1870)
The right of citizens of the United States to vote shall not
be denied or abridged by the United States or by any state on account of sex.
— Nineteenth Amendment (1920)
The right of citizens of the United States to vote in any
primary or other election . . . shall not be denied or abridged . . . by reason of failure to pay any poll tax or other tax.
— Twenty-fourth Amendment (1964)
The right of citizens of the United States, who are eighteen years of age or older, to vote, shall not be denied or abridged by the United States or by any state on account of age.
— Twenty-sixth Amendment (1971)
Friday, October 31, 2008
My entire household has been wiped out with a nasty cold, and while I've continued telecommuting in the midst of it all I'm often finding myself staring vacantly at my laptop screen. My theory is that my energy is simply not available to do work. Thanks entropy!
On the information overload fun side of entropy here's The Counter-Entropy Squad, the Weill Cornell Medical Library's short film presentation on Wednesday, October 29th, 2008
I also found this rather bizarre entropy combat strategy thanks to my native homeland of Northern California (I'm betting Sonoma County.) I am apparently more of a cataloging geek than I knew because I immediately thought JS.. think that's something about government...E? There's JS but no JSE in LC...
Tuesday, October 28, 2008
As Publicity Chair (I think... this was in an email at some point many months ago when I was still in the haze of my first few weeks on the job) for the 2009 Pacific Northwest Chapter of the Medical Library Association (PNC/MLA) conference, I am thrilled to announce that special guest speakers Gene Ambaum and Bill Barnes of Unshelved are promoting our meeting in Seattle before we have a website up for it yet. Is that quality customer service or what?
Save the date for October 17-20, 2009, in Seattle at the Washington Athletic Club. I promise not to show up there in my workout gear or yoga pants and hopefully my colleagues will do the same.
Monday, October 27, 2008
The Maternal and Child Health Library released a new edition of the
knowledge path, Domestic Violence. This electronic resource guide
has been released in time for Domestic Violence Awareness Month in
October. The knowledge path points to recent resources about
identifying and responding to domestic violence within the home and
the community. Separate sections identify resources for families and
resources about children exposed to domestic violence; dating
violence among adolescents; and violence between gay, lesbian,
bisexual, and transgender partners. The knowledge path is available
Knowledge paths on other maternal and child health (MCH) topics are
available at http://www.mchlibrary.info/KnowledgePaths/index.html.
We welcome your comments and help in disseminating this information
to the health education and health promotion communities.
Susan Brune Lorenzo, MLS
Maternal and Child Health Library
Web site: http://www.mchlibrary.info
National Center for Education in Maternal and Child Health at
Friday, October 24, 2008
Speaking of queasy, I'm not sure how the ginger was prepared in the 19th century for the medicine chest but a 21st century preparation of it in lollipops (Preggie Pops, which have now evolved to drops) helped me function well enough that I never had morning sickness at work. Laudanum is ethanol with opium (yum!), and the other medicine chest contents are
Goulard's extract [a solution of lead acetate and lead oxide], paregoric elixir [a camphorated tincture of opium], spirits of nitre, oppodeldoc [a mixture of soap in alcohol, to which camphor and sometimes a number of herbal essences, most notably wormwood, were added] and ether.100 years after this medicine chest there were numerous innovations in the field of medicine such as the discovery of insulin, vitamins and the (re-discovery of) penicillin. Check out the accomplishments of the Nobel Laureates of that era in addition to the (re)discoveries details, then note the following from the Antiseptics page with a header of How Germs Get Used to Antiseptics, 1921
VARY YOUR ANTISEPTICS; otherwise the disease germs will get used to them. The distinguished French physician and bacteriologist, Charles Richet, has recently laid before the French Academy of Sciences a note on researches made by him, together with Henry Cardot, on acquired characteristics and heredity in microbes. He experimented, among other things, on the influence of antiseptics, to determine especially whether bacteria may acquire immunity to toxic substances in the same manner that the higher animals do.It's 2008, and methicillin-resistant Staphylococcus aureus (MRSA, or mer-sah... one of a handful of acronyms where you don't say each individual letter out loud) is a real threat due to exactly what Dr. Richet was warning the medical community about regarding antibiotic resistance almost a century ago.
According to the Centers for Disease Control (CDC), there are over 12 million doctor visits for skin infections by American patients annually and half of them turn out to be MRSA. Please know the symptoms to watch for & check out the National MRSA Education Initiative for more information.
Wednesday, October 22, 2008
Here is a link to the public section of the American Health Information Management Association (AHIMA) website:
I'd recommend readers start with this paper from late 2005, the 14th on the list of documents at the link above.
Update: Maintaining a Legally Sound Health Record--Paper and Electronic
The electronic medical record (EMR) industry has been remarkably resilient to taking up basic documentation integrity functions, in large part because that is not something demanded by the buyers and users of these systems.
Eventually the accumulated weight of problematic and untrustworthy documentation will spill over into legal cases. Hopefully then the buyers and users of these systems will require better designed systems.
In the meantime, my associate and I have published a screening tool for evaluating electronic health records (EHRs) that we gave to AHIMA to publish as an article.
Gelzer, Reed D., Trites, Patricia, "Using Test Vignettes to Assess EHR Capabilities", in Journal of AHIMA, 5/2/06. We have published a more extensive testing methodology in book form, also thru AHIMA.
We find that many practices with EHRs do not know the risks these systems pose to them and so created these testing tools for an objective, reproducible evaluation of systems in place, or systems under consideration for purchase.
Copy functions in EHRs are actually just a subset of the problem of authorship accuracy. Since payment for services is driven by who actually provided the service, there are substantial financial incentives to use EHR capabilities to misrepresent who did what. Patricia A. Trites, of Healthcare Compliance Resources, often notes that EMR advertising especially highlights higher reimbursement as the main attraction of an EMR. Another auditing professional, Rebecca Busch of Medical Business Associates, notes that EMRs are simply too tempting to those she terms, "the ethically challenged".
My concern is that the majority of doctors, nurses, physician assistants (PAs) and other hardworking professionals will be doing things exactly as they should, but their EMR will betray them if ever challenged in a legal setting. For example, EMRs can dutifully record that documentation has been altered but not retain the original version, making it impossible for a doctor to prove that the alteration was not done for improper reasons.
I hope you have success in conveying to others the need for thorough due diligence in evaluating how a system actually works, to make sure it meets the basic requirements for valid, accurate, and trustworthy medical and business records.
Advocates for Documentation Integrity and Compliance
Monday, October 20, 2008
On October 15th, the National Network of Libraries of Medicine, Southeast Atlantic Region (NN/LM SEA) shared what a joint task force of the Medical Library Association (MLA) and the National Library of Medicine (NLM) proposed for the definition of an PHR.
Let's compare the two:
Personal Health Record (PHR): An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual.
MLA-NLM Task Force
Electronic Personal Health Record (PHR): PHR is a private, secure application through which an individual may access, manage and share his/her health information. The PHR can include information that is entered by the consumer and/or data from other sources such as pharmacies, labs, and care providers. The PHR might or might not include information from the electronic health record (EHR) which is maintained by the health care provider and is not synonymous with the HER. PHR sponsors include vendors who may or may not charge a fee, health care organizations such as hospitals and health insurance companies, or employers.
Both are written as found with no editing or emphasis from me. I'm assuming HER in the latter quote is a typo, and one I may understand the origin of since I recently attended a forum (will blog about it soon!) where Word kept auto-correcting EHR to HER and it nearly drove me insane.
When it comes to explaining what a PHR is to the general public and not other people in the medical field, librarianship or information technology, I'm not sure either definition will be sufficient as a stand alone. I see a stronger possibility of "...what?" being their response to the one from the medical librarians with 4 sentences and 3 variables vs. NAHIT's single sentence with no variables.
I studied Pogue's Anti-Jargon Dictionary and think NAHIT's 'interoperability' may fall in alignment with his 'Functionality' complaint. Clarifying the 'multiple sources' as being healthcare-related would help so it's not totally arbitrary. The Social Security Administration will not suddenly suddenly plunk your disability information in your PHR... at least I hope not.
On the other hand, we in medical librarianship are fond of calling people 'consumers'... so why did the definition include both 'individuals' and 'consumers' for describing the same population? Was it really necessary to include all the 'and/or', 'might or might not', 'may or may not' variables up front for a basic definition? Why are we mentioning an electronic health record (EHR) in the definition for a PHR without also defining an EHR beyond something 'maintained by the health care provider', thus putting prior assumption on the consumer/individual to know exactly what that entails?
I am all for promotion of consumer health resources as part of PHR applications, but what exactly is the 'information assistance statement' that is being sent to these organizations to include in PHRs?
Am I a traitor to my field in respectfully disagreeing with the members of the joint task force about their definition for PHRs and wanting to use NAHIT's?
Friday, October 17, 2008
What will librarians (or whatever the job title turns into) of 2069 refer to in their era about ours? My great-grandfather's cousin is 103 and still sharp as a tack and my grandmother's cousin in her 80s runs our family's genealogy website, so perhaps I'll be a ninety-somethingbrarian and get to offer my own perspective on whatever media we're using then!
(above is an embedded video which may not show up in RSS feeds, it's from the Internet Archive and not YouTube)
About 8 minutes and 10 seconds into the film is a perky medical librarian. I share an alarming similarity with her in that my medical terminology pronunciation is currently pretty awful although I'm slowly making progress.
I particularly like this quote that is 9 minutes and 25 seconds into the film.
You will derive satisfaction from a knowledge that your work is vital and essential in forming the kind of world in which you want to live.
I can only hope so. I'm doing my part and thankful that Brewster Kahle is doing the same on a much bigger scale.
Wednesday, October 15, 2008
Who are you?
I'm fairly certain that if you're currently reading this you know exactly who I am in real life. There aren't many of us with brand new distance learning degrees from Texas running around in the Washington medical library community, but before now I have never officially connected the two identities. So, hi. My professional name is Nicole S. Dettmar and I work for the National Network of Libraries of Medicine (NN/LM) which is coordinated by the National Library of Medicine (NLM). If you call me Nicole you've either known me prior to summer 1990, are a telemarketer or someone calling about Official Business, or have made a cognitive disconnect due to repeated Facebook exposure where I waltz around with my legal name. In real life, both professional and personal, the post-1990 crowd calls me Nikki. I've updated my Blogger profile to reflect me as me. It trips me out when people call me Eagle Dawg, but I do respond to that too now.
What's the big deal about going by your name?
The big deal is, to my knowledge (please correct me if I'm wrong so I don't feel like such a freak) I am the only one in NN/LM & NLM currently writing a personal public blog about my perspectives in health informatics, medical librarianship, NLM resources, etc. In my real life fledgling medical library career I am often referred to by my employer more than who I am as an individual. That is fine within the context of my job, but I want to make a few things crystal clear here about me and Eagle Dawg Blog:
- This is not an official NN/LM blog.
- I have not and never will write here on federal taxpayer time, ever. I take that very seriously.
- Some inherent bias towards NLM/NIH/HHS resources is probably unavoidable.
- If you're an American taxpayer, you've already paid for these resources so it's not like I'm trying to sell you something.
- Criticism of NLM/NIH/HHS is probably unavoidable. Don't you have days where you go bonkers from the bureaucracy?
The truth? I don't know what direction scholarly publication will take in the future. I don't think it will include blogs in their current form, but what will these evolve into? I want all my work in this field to be known by and attributed to me as me and not me as a pseudonym. Yes, the recent Annoyed Librarian hiring at Library Journal spurred on this change to a certain extent, but so did receiving a recommended resource list with blogger pseudonyms instead of real names a few weeks ago.
What the heck is an Eagle Dawg anyway?
I was trying to think of what sounded creative and not cutesy with Blog for a name. Dawg quickly became obvious, the Husky is the mascot for the University of Washington & we are DAWGS not dogs. UW is where I (finally) received my Bachelor of Arts degree in Social Sciences and Communication in 2005 thanks to the evening degree program. I have also worked for UW for over 10 years, hopping from one department & career to another while getting married, having a chronic illness (now in remission), having a child and earning two degrees. Not many employers allow that much flexibility and I am most grateful for it. I wouldn't be where I am now without the unbelievable support of my former bosses and many coworkers.
If I was going to use Dawg as part of the blog name, then I also had to include the Eagle. That is the mascot of the University of North Texas, where I received my Master of Science in Information Science degree in 2007. The Eagle not only sounds better first, but needs to be thanks to an overwhelmingly generous fellowship UNT awarded me in distance learning health informatics. I have much to give back because I was given so much.
There you have it. Any questions?