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On tearing down information walls.

 On tearing down information walls.photo © 2006 Laura Chifiriuc | more info (via: Wylio)It’s been a tough week.  I lost two friends.

One of those deaths is relevant here.

Niki reached out to me several years ago, a year after her brain tumor diagnosis.

She needed a librarian to help her get to documents and emerging research findings that weren’t freely available.

Niki did not have an advanced degree. She had no university contacts.

What she had was a serious information need and a pressing desire to learn what she needed to learn to understand dense medical content.

Niki was beautiful and intrepid.

But she quickly learned that the information she needed was not available in the free medical portals she’d already exploited.  Most of it existed behind a wall even she could not move.

Niki would come to me with citations and abstracts, names of researchers, and leads relating to new clinical trials.  I used the databases we subscribed to and called in university favors to get her to the fulltext she needed.

She got really good at reading and interpreting and sharing the dense language of cancer research for herself and for the growing online community she supported.

In what felt like black market activity, I poked into subscriptions I didn’t subscribe to.  I moved what walls I could move.

And as I did, I wondered how many other Nikis did not have access to a personal librarian, or just never knew they could seek an information advocate to easily move the walls separating them from the research they needed.

Yes, information is a commodity.

But sometimes information is a life and death issue.

How can we work together to tear down walls to content, to make life just a little easier for those who are desperate to understand their options?

Can we establish some kind of program in honor of Niki?

I don’t know how, but I know we must find a way to offer some kind of research lifeline to those with critical and immediate information needs.

Situations like this feel antithetical to everything I stand for as a librarian.

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Joyce Valenza About Joyce Valenza

Joyce is the teacher-librarian at Springfield Township High School, a technology writer, and a blogger. Follow her on Twitter: @joycevalenza

Comments

  1. I am so very sorry for the loss of your friends. But your article was excellent, poignant and oh, so relevant. Thank you, Joyce.

  2. Dianne Oberg says:

    A poignant story — one that will touch many of us. How wonderful that Niki was able to reach out to you, Joyce. I hope our students and colleagues are able to reach out to us because they feel that we are open, non-judgemental and ready to help (and not the keepers of the things, the enforcers of the rules, the bastions of the conventional…).

  3. Val Edwards says:

    This is such a critical topic. There are organizations that will help locate this kind of information. One that my family is very involved with is the Livestrong organization. They not only raise funds for cancer research and advocacy, they proivde support to those in the fight of their lives. Contacting Livestrong provides those fighting cancer and their families and friends with a lifeline to information on clinical trials, how to cope with daily challenges and medical record keeping which can be so critical when seeing multiple specialists. Their services are free and they are ready and eager to serve. Help can be found at livestrong.org.

  4. Sara Kelly Johns joycevalenza says:

    Thanks for sharing that very helpful information, Val!

    I am also wondering if there is space in library world for emergency information concierges? Or if database vendors might be will to provide limited pro bono subscriptions for folks in critical need of current research.

  5. Deb Peterson says:

    Thanks for sharing Niki’s story. It shows that there is a real need for information that is not freely accessible through a general search engine. I’m glad that Niki had you to help pull in those favors and to go beyond what was easily available to what was needed.

    I am sorry for your loss.

  6. Jasmine says:

    I am so sorry for your loss. Your friend was lucky to have you.

  7. Len says:

    Joyce – you have an interesting point, that vendors may be able to provide pro bono access to their databases for emergencies. I am willing to bet that this is not only possible, but vital in situations like yours. We get free trials all of the time from vendors who want to sell us products. Providing pro bono access in emergencies would be another excellent way for vendors to demo their databases, as well as great PR moves for their companies. This, along with the obvious fact that it’s just the right thing to do, would make it impossible for database vendors to say no to joining an organization that provides free information to people who really need it.
    Combining your ideas with a influential organizations such as Livestrong, we should be able to connect people to the most useful information possible. Oh wait – that is the mission of every librarian, is it not?

    I wonder how many, if any, librarians Livestrong and other groups like it have on staff…

  8. Thank you Joyce. I have been wanting to do a story on Niki’s work for a long time, but life has not provided time until now. I am working on a story for Reason Magazine now. I have concluded some interviews, tugged some information strings, and I am shocked at the state of the whole disease field. As a science writer, I am well aware that there are diseases that we know little or nothing about, but it is still shocking when you stumble across them, find the people who made a difference, and see how little it takes to make monumental improvements. Thanks for helping. I will find on on Facebook.

  9. My now 16-yr old son was diagnosed with malignant brain cancer in 2003. I had lost a niece 7 years earlier to brain cancer at the age of 4 so we understood the situation we were in.

    It was hours of internet research that led his father and I to make the decision to leave San Diego and travel for treatment in Memphis, where they had a treatment protocol with the highest survival statistics and that used a lower dose of radiation than was being proposed at the California hospitals we visited.

    While not all people are interested in taking such a direct role in their own or their loved one’s care, in the end it is the patient or their caregivers who get to make the final decisions. Since most of us aren’t medical professionals, it’s crucial to have access to the published results of clinical trials in order to make an informed treatment decision.

    I had the pleasure of “knowing” dear Niki after having been introduced to her via a mutual friend.

    It is a neverending source of frustration to me that there is no method for patients to access the published results of clinical trials for research that receives government funding. It seems a grave injustice that we, the taxpayers, cannot read the published results of the clinical trials that we paid for without paying again.

    While I do not dispute the right of the journals to charge the general public and the medical community for subscriptions to their publications, I believe there needs to be a mechanism for the patients themselves to gain access to research that affects their own health, without this how can we be educated consumers?

    Today if I encounter a journal where a paid subscription is needed to gain access, and if my local library can’t get the article for me, I contact my son’s oncologist at St. Jude and ask them to get it for me and they will. When we are back at St. Jude for our annual followup visit, I discovered by accident that when I’m on the hospital wi-fi network, I have access to all sorts of journals I can’t normally because of St. Jude’s site license.

    But I don’t believe I should have to resort to these methods. Patient access should be provided for ALL taxpayer-funded research.

    I miss Niki deeply. Bless you for helping her.

  10. Nancy says:

    Thank you for sharing such a touching personal story. Hopefully your blog will help to spread the word that people should have access to this important information.

  11. mrsdurff says:

    Sounds familiar. When I was diagnosed with a rare brain malformation, I too sought out all the research…I became my own librarian with the help of my stepmom’s medical degrees to move some walls even she didn’t know could be moved. You’re right, how many people don’t have a personal librarian?

  12. Thank you for sharing something so personal and powerful. Niki was fortunate to have you but at the same time it is somewhat unfortunate that access to information is so difficult. I cannot totally comprehend why it is this difficult to access information and further to this what is the benefit of denying access?

  13. Kate says:

    Once upon a time when time was more plentiful I volunteered at Radical Reference (http://radicalreference.info/). Their model is a good one to use for inspiration: a group of concerned librarians and library students who join together to provide reference support to a specific population. I bet they’d likely share info to get the Drupal backend up quickly if asked.

  14. Kathleen says:

    It’s been a month, but I haven’t been able to forget this post. Upon re-reading, I really, really hope that you will submit this to a major newspaper. It’s an issue that everyone needs to be aware of. I know it has challenged me to remain mindful of the democratic principals of libraries (and librarians) . Thank you.

Trackbacks

  1. [...] You've read Darnton! Even if we think we can do without record labels and publishers we still need/want curators. Curators deserve to be paid, too- although in this era of passionate sharing for free it will be harder. I haven't read "Curation Nation" yet, but it's on my list. I'm not an academic librarian but I can see how academe would be slow to change. Even beyond the complex system for funding scholarship (and maybe making a bit of extra) there's the fact y'all are still running around in gowns based on medieval clothing. Seriously though– there's few other groups better positioned to pull off a shift. I'm pulling for you because WE NEED YOU TO SUCCEED. There's so much important information that is simply too expensive. [...]

  2. [...] Joyce Valenza has a really compelling piece about why being able to find and evaluate information really is a crucial skill – and why restrictions on access can be prohibitive. [...]

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