Wednesday, July 9, 2014


I just found my soapbox and I'm stepping atop as I type.

I volunteer.  I do lots of advocacy on my own dime.  I wouldn't change a thing about what has gone on over these past three years which is when I first stepped into the world of social media.  I've learned so much, I've met so many different people and the experience continues as a lesson in self-education.

The relationships I've forged are ones I cherish and my life is immeasurably better for having the richness of those friendships incorporated into the tapestry of my own life.  Yes, that means you... and you... and all of you.

In one of my earliest conversations with Lori, now one of my closest friends on the planet, we talked about access to research publications.  We were in a hotel room, perhaps sipping a glass of red wine, unwinding from a day of presentations.  Digesting what we heard, bouncing thoughts around, realizing how much we could not access and trying to figure out how to change this paradigm.

As patients, stakeholders, (the current term which I don't find to be the best word but for now, it's the best terminology available) we should be able to access what is being presented.  My recollection, admittedly not the best at times, is that our conversation took place well over two years ago.  How would we forge a way to gain access to the latest research without paying for every single article that may or may not contain information that we might find relevant or helpful.

My friend and one of the most intelligent people I know, Jack Andraka, has been shouting about paywalls and his frustration over the (customarily normal) $35.00 fee for "ordinary" people to access journal articles.  Although he is primarily known for winning the Intel Science Fair which began a cascade of events that turned him into a rock star, I know that paywalls are a big deal for him.  Me Too.

Paywalls create silos and silos stifle collaboration.  They also make it impossible for patients to be part of that collaborative process unless they have an endless stream of funds.  I don't have an endless stream of funds.  Much of my advocacy is done at my own expense, either directly in costs associated with traveling to different events or indirectly, in the time I spend putting together information when I could/should be doing things to help put food on a table or to keep the A/C operating when the thermometer reads 95 degrees and the humidity is over 50%.

I've been fortunate.  I've also had to step up and spend much more time since the start of this year helping sort out and reorganize some business related office issues.  A real challenge, given my issue with numbers and my lack of ability to stay on task, to organize myself, but with help, it's getting done.  It's also the reason why there has been far less content on this blog.  I miss this.  Lots.

This isn't a bitch session about any of that, but rather, it's to share an initiative that may be of interest to some and should be of interest to anyone who loves the science and is confounded by the roadblocks created by paywalls.

Open Access Button can be found at  It's a way of crowdsourcing our frustration with the hopes that we can break down or if necessary, scale our way over the paywalls.  I've used it a few times and each time, I was able to gain access to the articles.  It wasn't the journals that provided the access.  I suspect it will be a long time before that changes. The more of us who participate, the more likely we will achieve success.

patientAccess is an initiative of Cancer.Net and a collaborative effort among several organizations and journals.  It works like a charm.  I registered.  I have gotten PDF versions of full articles sent to me within hours of requesting access.  A few other journals have begun their own versions where they charge $3.50 for the access.  That's a far cry from $35.00 but it still irritates me.  And still, there are exponentially more journals that do not allow patient access.  Period.  And yes, that irritates me too.

If our tax dollars or our donor dollars are funding research and in some cases, if we are actually participants in a research study, I think it's a bit disingenuous to ask us to pay any sum of money to read the studies.  I like to write about research.  I don't want to repackage what I'm reading in Science Today or any other publication.

In doing that, I'm simply restating the observations of someone else without reading the actual research to see if there was a point that may have been overlooked by a journalist that may hold tremendous significance to me, the stakeholder.  I want to read the study with my own eyes and determine what I feel is important to me, and to those upon whose behalf I choose to advocate.

As an aside, there was a recent study published that was of direct interest to me and likely to all of us who are actively involved in social media.  Perceived healthcare provider reactions to patient and caregiver use of online communities directly involves each and every one of us.  And yet, I could not read the article, determine the methodology employed or anything else that matters to me.  Ultimately, I was given access to the article by several angels who reached out to me when I mentioned I felt like this was a bit like being talked about behind my back.

When I was able to read the article in its entirety, the very last line before the references is kind of ridiculous:

We would also like to acknowledge Paul Wicks and Dave Clifford of Patients Like Me for their assistance identifying potential participants for this study.  

Huh?  Two years ago.  In fact, two years ago TODAY, on the Patients Like Me blog, The Value of Openness appeared.  It's an interview with patient advocate Graham Steel on the importance of open access.  The Patients Like Me community helped fill a study about online patient communities and then, the resulting publication was blocked from access to patient communities by a paywall???

It doesn't take Einstein to see that something is very wrong with this picture.......

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  1. The additionally amazing bit about this, is that the scientists providing these articles are PAYING to having their work published in those journals. They not only give over the right of that article, but also PAY to have it included (assuming it's accepted through a peer review process that often involves canvassing experts in the field to review articles, for free and send feedback.) Journals and their pay walls are a 'because we can' system. Lay people should have access options beyond just becoming university students. So, I not only see where you are coming from, but very much agree.

    (This is knowledge based upon my husband's experience while earning his physics doctorate)

  2. (At the very least, I'd love for there to be a database we could register with that would allow access to all of these journals - even if a fee was required, I assume it would be far more reasonable. So far, I haven't found such a place online that is affordable, and community libraries seems to have more topical than scientific databases for access)

    Z is a researcher, and sometimes he can get around this by going directly to the author's own website/profile page.

  3. I just had a conversation (yesterday) with an oncologist (not mine) about one of his colleagues (my oncologist) and I mentioned that she gives me articles to read. His response: "She does?" Yes. She does. I never gave it much thought until I read this. I'm going to have to do a little research on my own. Thanks AM.

  4. If know someone at a University, then they can access the journals for you. Universities pay large subscription fees to Journal Publishers for this privilege.
    Some Universities allow you to become an "External Reader" which gives you the same privileges.
    The whole academic publishing systems has been made obsolete by the internet. If health advocates were to lobby government funding agencies, to direct researchers to publish in open access journals, everyone would be better off (except the Academic publishers!).

    Newer journals with a fee for publishing, but then open access to all, are appearing, but are not yet the norm.

    Cheers, Andrew


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