Comments on: On tearing down information walls.

By: Links of interest: August 20th, 2011 « A Modern Hypatia

Links of interest: August 20th, 2011 « A Modern Hypatia — Sat, 20 Aug 2011 18:30:11 +0000

[...] 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. [...]

By: Kathleen

Kathleen — Tue, 16 Aug 2011 20:07:15 +0000

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.

By: Borders bankrupt, bookstores closing as early as friday - Page 3 - SLUniverse Forums

Wed, 20 Jul 2011 03:48:24 +0000

[...] 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. [...]

By: Kate

Kate — Wed, 13 Jul 2011 18:54:02 +0000

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.

By: Mare Maticveski

Mare Maticveski — Wed, 13 Jul 2011 12:28:18 +0000

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?

By: mrsdurff

mrsdurff — Wed, 13 Jul 2011 03:04:36 +0000

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?

By: Nancy

Nancy — Wed, 13 Jul 2011 00:44:59 +0000

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.

By: Kathleen Bell

Kathleen Bell — Wed, 13 Jul 2011 00:21:19 +0000

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.

By: Lene Johansen

Lene Johansen — Tue, 12 Jul 2011 21:48:47 +0000

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.

By: Niki Perry, Brain Cancer Warrior | byline : lene johansen

Niki Perry, Brain Cancer Warrior | byline : lene johansen — Tue, 12 Jul 2011 21:45:30 +0000

[...] On tearing down information walls [...]