In remembrance: Make a difference

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 Foolery #14: Welcome to wherever you are

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.

Change: Pants, PubMed & Patron Expectations

Thank you for your comments and Krafty Librarian's mention about the PubMed Discovery Initiative post. Since then there have been a number of new RSS subscriptions (welcome all!) and a fair amount of web traffic due to that particular entry, so I wanted to mention that I do have a Creative Commons license here. You are welcome to copy, distribute and transmit any of my work here as long as you link back to whatever post it came from in your work. Drop me a comment if you'd like, I love to see what others are thinking. Keep asking so that we may understand, keep sharing so that we may learn.

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?

Friday Foolery #13: Hats vs. pants - Don't let your kids read this

(A 'real' post is coming later today mentioning pants as well!)

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?

Humans would be just as cold if they went without trousers as if they went without a hat.

Oh dear. I have visions of defiant mini streakers in the snow with hats on...

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.

(via KevinMD)

Friday Foolery #12: Card carrying member

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!

PubMed & the Discovery Initiative

Why do they keep changing PubMed so much lately? It is driving me crazy!

NCBI: Discovery Initiative.

... huh?

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

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.

They're trying to make PubMed like GOOGLE?!

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.

WHAT?!

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?

Ethical Decision Making in Times of Public Health Catastrophe

Yesterday I attended the Northwest Center for Public Health Practice's (NWCPHP) first of three web conferences about ethical decision making, the session description is

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.

NLM: Second Life vs. Reality

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 Foolery #11: Worthless PubMed trivia query

I'm at the National Library of Medicine for orientation this week where I'm learning loads of useful information. I was worried that I'd have no content to add to my Foolery line and would have to research or come up with something original (I don't recommend that after jumping 3 time zones) when the perfect solution arrived Thursday afternoon.

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! :)

Foreshadowing: Women *are* cutting back on healthcare due to cost

In the pre-Thanksgiving blog post where I encouraged you to talk about health with your family (you did, right?) I theorized

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.

On the positive side, women feel more positive about aging and named Tina Turner as the celebrity over age 50 that they admired most. Rock on!

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."