Update on 12/3/14: Nature re-ignited the access debate when they announced that they will make all their articles “free to view” (but if you read the fine print: it makes the “dark social” practice of #icanhazpdf and other access work-arounds illegal). To catch up, see my Storify: Five-alarm fire in Open Access Land.
Original post:
Marketplace aired a story last week entitled, “Publicly funded research for a price,” which echoed the story of Edwin Murphy, who in 1994 had to impersonate his doctor in order to read the risks and benefits of a medical procedure he was considering. (Hat tip to Carol Torgan for alerting me to the story.)
From the Marketplace introduction:
A lot of the scientific research that goes on in this country is really expensive. And, as it happens, a lot of it is publicly funded. But when taxpayers want to read a particular study that has been paid for with their money, they have to pay again to read about it in, say, The New England Journal of Medicine.
Congress is about to take up a bill that would help companies that publish those kinds of journals protect their business models. But it would also limit general access to publicly funded research.
Things have improved since 1994, but read the comments associated with the Marketplace story:
…there is nothing stopping any law abiding citizen from walking into our library and access all the scientific literature that I have. The only limitation is that you cannot do it at home in the comfort of your pajamas.
When I posted this to Twitter, Gilles Frydman answered: “Commenter with PJs doesn’t live in rural or poor area.” Indeed, many times in my research I have heard personal stories about people who do not have the means or wherewithal to get to a medical or science library which could provide access to journal articles. So I asked a question on Twitter: “What % of sci/med library users are laypeople?” Shamsha Damani, a medical librarian in Texas, replied: “our library sees v. few laypeople, prob. b/c of our location.” Then: “public access to scientific literature not easy. as one commenter said, u have to jump thru hoops. doable, but not easy.” Exactly. That’s why I was skeptical about the “let them eat cake” attitude of the commenter.
E-patients.net published Jennifer McLennan’s essay on the NIH public access policy last fall – what other resources are available for those who want to educate themselves about this issue?
Hi Susannah,
Peter Suber is a leading authority and proponent of open access to publicly funded research. See his blog: http://www.earlham.edu/~peters/fos/fosblog.html
where he includes a link to an overview document.
If you’re not familiar with Peter’s blog or the history of the open access movement, I’d be happy to provide some context.
It’s sad, silly and a bit ridiculous that the public has to pay twice to access their own research. The first time we pay through our taxes to fund the research. The second time we pay a publisher to access the research results.
Although onerous, I’ve found that if you can contact one of the authors of the study via email, they can usually (but not always) send you a free copy of the study as a PDF. Certainly not ideal.
The system we created, however, really doesn’t offer a lot of alternatives. Peer-reviewed journals rely on subscriptions in order to fund their business. If suddenly half (or more) of their studies were made public-access, I imagine most of them would go out of business as people canceled their subscriptions en masse.
I’m not sure what the solution is, but I do agree with the fact that publicly-funded research should be readily accessible by the public. Online. At no cost.
Janice, thanks so much for that link – it’s a goldmine of information! I’ve been hearing, for example, about the Elsevier/Merck fake journal, but haven’t had time to run it down.
John, yes, I’ve had the same experience with direct email with authors, but you & I are at the tippy-top of the pyramid of in-the-know and empowered researchers (just short of applying to library science school).
Now what about the other side? Does anyone have links to publisher viewpoints?
I have a great concern – as Gilles pointed out – for the people who aren’t online, or live in rural areas, and can’t get the same quality and amount of information that I can. The haves and the have-not have turned into thse who are online and those who are not.
We do have a dilemma – I agree that the research should be freely available to the public (who funded it) but yes, the peer-reviewed magazines would lose subscribers. I have no solution. And haven’t yet read the blog referenced above.
I encourage people to read that story of Edwin Murphy, which opens the e-patient white paper. The wiki version is here.
The man wanted to understand surgery he was about to have, and was not allowed to see the info about it.
That was 1994, the year when Netscape reviewed the first browser, so that effectively the Web was born. How far have we progressed?
Having read some publications and also being aware of what is necessary to write and understand medical literature, I’m not convinced that being able to see the results of studies would help patients understand anything.
Your typical peer-reviewed medical journal contains articles written in language that would be dense, at best, or illegible, at worst, to your average person. This is not an accessibility issue but an understandability issue.
There is still the question of how to make the lay public aware of what happens in literature, but this problem is broader than simply making the literature available. Just because something is THERE doesn’t mean people will read or understand it.
A better solution would be to provide the lay public with an easy-to-understand, up-to-date and easily-available version of scientific publications. At least then you can lead the horse to the water, if not force them to drink. An ambitious proposition, considering the proliferation of medical journals, and the disconnect between what an article SAYS and what it MEANS. To say nothing of the fact that even the best publications are periodically debunked, superseded by newer research, etc
Ben, I know what you mean, but I suggest you may underestimate the motivation of patients who are desperate, or whose physicians have been unable for one reason or another to find a solution.
I’m a member of the ACOR.org kidney cancer group and you would not BELIEVE how much a patient community can understand when their lives are on the line. Especially when the doctors on whom we’re supposed to rely don’t have time to keep on everything.
As a real-world example, please read chapter 5 of the e-patient white paper, e-Patients as Medical Researchers. Or see our categories (links on the right side of this blog) for e-patient stories and for Understanding Statistics. Especially the extraordinary article we discussed last fall, written by MDs, about our collective statistical illiteracy – among policy people, health reporters, and even among MDs.
The authors report that a majority of doctors who were given a set of straight statistical info about mammographies misestimated the probability a patient has cancer by a factor of ten. Too high or too low.
And those were gynecologists.
One thing we (the e-patients) have come to realize is that we cannot for a MINUTE presume that the published conclusions we hear about are being accurately reported. One egregious example is the reporting of benefits of statins, which I wrote about on my personal blog. Statins are superficially reported as reducing risk by 35% – but when I (“just a patient”) review the NON-dumbed-down data, I see that in reality it only changes the outcome by one patient in 200. And for this we spend $25B/year.
That’s not to mention the many conflicts of interests that are “fully disclosed” but rarely visible, and never visible in consumer-level abstracts.
Or this, from today’s Wall Street Journal Health Blog: Academic researchers exaggerate study results.
(And that’s not even to mention that some useful information may exist in unpublished studies. That has nothing to do with the published studies we’re discussing on this post, but it certainly shows how far e-patients will go when a family member’s life is at stake.)
It’s not just me. Take a look at this year’s TED Talk by Tim Berners-Lee, with the rallying cry “Raw data now! Raw data now!” It’s on a different subject but the point is absolutely the same: if we depend on someone else to interpret the data for us, then we are at the mercy of that interpretation, which (a) may be a misinterpretation (see above), and (b) may have overlooked some finding that the original interpreter wasn’t seeking.
The video is here; I hope it will embed here:
Raw data, NOW. Lives are at stake, and billions of budget. Please don’t ask us to rely on watered-down and possibly misinterpreted reports about journal articles.
Excellent topic and one close to my heart. I believe patients should always have access to any data/information their doctors have. Frankly, I’ve found I’m more literate on certain subjects (i.e. Cushing’s) than most doctors SIMPLY because I’ve worked very hard to be. I gained access to journal materials through a medical school library subscription and taught myself with the aid of others who have done the same. I believe it saved my life.
Of course there are those who won’t understand. Heck, they probably have a hard time reading some of the books in the library. Does that mean we don’t allow access to the library books? No! Secondly, even if I don’t understand, at least I have enough knowledge to go ask someone who does. And thirdly, I believe we short-change the average citizen by saying she might not understand. It’s amazing what one can learn when one needs to know.
Within the Cushing’s community we have some very learned/knowledgeable folks. Those of us who have learned share with those who need to know. We have blogs, message boards, and medical personnel who help us. We believe in paying it forward. Hiding/blocking information only hurts folks. No matter the level of understanding, it needs to be accessible. When we allow folks to rely on the “expertise” of main stream media to interpret information (to a fault!) we have failed them by not allowing them access to all published media.
I am going to quote a portion of an email that was shared with me yesterday:
That pretty much sums it up.
Dave –
I echo the “Real data! NOW!” rallying cry.
Luckily in healthcare (and even ugly stepcousin social media), we do have a few sparkling examples of sites that give us data to crunch…
First is CureTogether.com. To term CureTogether’s incredible community wisdom “crowdsourcing” health would be to do the participants, and the data generated, a grave injustice.
Second is the tendency/foresight some social media sites have to track and analyze raw data from users around ‘sentinel’ events like the #swineflu craze.
Exhibit A see details of Facebook’s activity: http://www.nextgov.com/web_headlines/wh_20090429_6162.php?oref=rss?zone=NGhealthit
While I recognize and admire the journal’s business model (who wouldn’t? After all it’s more solid than some Health 2.0 models….), there are also multiple places to get our grubby mitts on research (PLoS for one) as near ‘unadulterated’ – if any study can be said to be unadulterated – as it can get. Gratis.
Let’s also be careful not to oversimplify here. Academic publishing, particularly in medicine/health, is tied back into a wide variety of economic super and substructures, not the least of which is the university/academic medical system of tenure and promotion for authors who publish.
And of course let’s not even bring up the concept of ‘sponsored’ research via well-intentioned fellowships and potentially not so well-intentioned manufacturers who want a credible advertorial placement.
The problem with patient (and advocate) access to research here, just as everywhere else in healthcare, is a tangled web of a cluster-you-know-what, with mixed messages, veiled incentives, political/power plays, and the drive for fame and fortune.
Seriously, who needs soap operas when you work in healthcare?
What’s new? It’s that way with anything. Not just research. We all act like this is something unique to healthcare. It isn’t. It’s life.
Susannah,
I like to think I see both sides of the argument: the benefit of access to medical (or other) research for motivated individuals and researchers, plus the need for publishers to be compensated for the value they add.
Overall, access to research articles is becoming more freely available, even by the largest journal publishers–at least after a certain embargo period. Current PubMed policy is a key driver of the shift. Also, commercial publishers are realizing that some free content helps them sell other premium content & related tools. There’s too many issues to cover in a short comment, but I’ll dig up a couple of good references that address both sides of the argument. (Note, I’m not an advocate of the “author pays” model.) Here’s something I wrote back in 2004: http://www.shore.com/commentary/newsanal/items/2004/20041025openaccess.html.
I, too, need to look more closely at the Merck/Elsevier “fake journal” situation. Pharma sponsors lots of content–and research; it sounds to me as though a sponsored collection of articles was not appropriately labeled. Transparency is key!
I wrote about these issues a while back, in the ESUN (Electronic Sarcoma Update Newsletter) issue of April 09: “Open Acess: A Basic Right Underlying Participatory Medicine“. In the article there is a 2004 quote from John Jarvis, Managing Director at Wiley Europe, definitely worth reproducing here:
Let me repeat what I said in the article:
So, Gilles, to play Financier’s Advocate, what business model can you propose to fund journals?
I certainly feel (at a gut level) that if research is publicly funded then the results should be available to the public. But I haven’t worked out the business model. Should the public funding include the cost of publication?
Dave and Gilles, I believe most libraries (including state colleges/universities/med schools) are funded with public monies. Subscriptions are bought by libraries. All citizens, within their own state and through national libraries, should have the same access rights to those ejournals and library journals as students do. I suspect journals get most of their funds through these large subscriptions, anyhow. Almost all journals are accessible online through these library subscriptions.
Of course the public funding should include the cost of publication. You are talking about $1,500 to $2,000 per article if you publish in Open Access publications like PLoS. JMIR is, if my memory is correct, about $1K. When receiving public grants it shouldn’t be too complicated to include that cost.
Plus the NIH could probably obtain significant discount by buying publication costs in blocks an then delivering them individually to researchers who are ready to publish. If publishers were interested we could certainly find solutions. But as usual, those who currently hold the power really, really hate big changes. I don’t even feel bad for them.
Susannah –
Great post and great comments. As a scientist I’ve peer reviewed journal articles for free, and helped pay for them through author page charges and professional membership dues. As a writer, I’ve paid from my pocket for access, and also obtained them via contacting the author or getting a copy from a press office.
One of the biggest advocates of open access is former NIH director Harold Varmus – see his editorial in PLoS, an open access journal http://tinyurl.com/cf4ty2. This debate is far from over, but the good news is that we are in fact discussing public access. Knowledge is power. In the mean time, individuals have free access to many articles via PubMed Central http://www.pubmedcentral.nih.gov/. For those with a medical or science library around, they are a pretty great place to hang out.
I’m just watching the Berners-Lee video again. I only remembered “Raw data now!” but looky here.
11:13 “You have no idea the number of excuses people come up with to hang onto their data and not give it to you – even though you’ve paid for it, as a taxpayer.” Ha!
Ah! I knew it! Straight from the NIH FAQ:
“Will NIH pay for publication costs?
Yes. The NIH will reimburse publication costs, including author fees, for grants and contracts on three conditions: (1) such costs incurred are actual, allowable, and reasonable to advance the objectives of the award; (2) costs are charged consistently regardless of the source of support; (3) all other applicable rules on allowability of costs are met.”
And then one last fact. When asked in his congressional testimony about the costs of publicly financed research, NIH director Elias Zerhouni spoke against the bill. Zerhouni explained that the NIH spent an average of $300,000 in taxpayer money for every paper produced, and that he sought to maximize the return on that investment for the public, and for scientists.
“This is not an issue of economic impact. This is not an issue of peer review,” he argued.
So, is it just a culinary issue, after all?
Culinary?
And: are you saying that the intent of the NIH is to cover all the costs of operating a JOURNAL, such that any income the journal receives is gravy? It’s hard for me to believe that, but I’ve been saying that a lot, this past year.
Another blog to search for scholarly publishing/open access vs. not open access news is Gunther Eysenbach’s
http://gunther-eysenbach.blogspot.com/search?q=open+access
Thank you, everyone, for the comments. The “hive mind” is working overtime to educate me and others on this issue!
Let me take this opportunity to say that e-patients.net welcomes posts from new contributors: if you have something to say that won’t fit in a comment, please contact me or anyone else on the “About” page.
Also, just a quick introduction and welcome to Marcia Zorn, a reference librarian at the National Library of Medicine who for many years has curated an ongoing index of health communication websites and resources, all of which are archived at http://www.healthcommunication.net/ When I could keep up with them, her emails were a beacon in my inbox!
Hi, all–
Thank you, Susannah, for that introduction.
Actually, I fell behind in providing lists for the Coalition Web site at http://www.healthcommunication.net/ where they were being archived.
The lists have always been a PERSONAL (not NLM) project. I still do them so I can try to keep track of health communication-related sites. But I quit sharing them because I didn’t have time to check all the sites and edit if needed.
Really important conversation. A couple of thoughts:
1. The e-patients I know shamelessly adhere to the “steal that PDF” philosophy of peer-reviewed literature. I’m not proud of that, but when your life depends on it, the niceties of copyright seem to take a back seat to open source. And, given the fact that we HAVE already paid for so much of this research as taxpayers, I guess my guilt can be assuaged.
2. No, it’s not easy, but many public libraries (the garden variety community type) subscribe to extensive online subscription services such as ProQuest, which have the full text of many scientific journals. Library members can access these at the library, or even remotely if they have a library card number. I’ve found this to be a lifeline when all else fails.
3. Regarding the layman’s ability to comprehend professional literature, I readily admit that I do not always understand every word of every article. However, it is really not rocket science to understand an abstract, which typically contains the highlights of findings and results. I can certainly understand enough to know whether I should bring the full article to my doctor as, I daresay, do many e-patients.
Judy, downloading a PDF for personal educational use (“fair use” ) is not necessarily stealing. Conditions are explained at http://www.lib.umn.edu/copyright/fairuse.phtml
Or did I misunderstand your thought about downloading pdfs from the Internet?
It was my good fortune to be present at the ‘founding’ lunch that led to open access in the U.S. Vitek Tracz, my former business partner (BioMedNet, HMS Beagle, Praxis Press) and UK publishing entrepreneur extraordinaire, met with David Lipman of NLM back in 1999/2000 (?) presenting his conviction that OA must be implemented now, for the reasons cited in this blog. After 3 hours of debate, Lipman agreed to approach then NIH-director Harold Varmus to approve the initiative.
It’s been disappointing, nearly a decade later, despite Tracz’s and Lipman’s energetic efforts, that NIH has been unable to stipulate full open access for all publications indexed in PubMed/Medline. The watered-down version of the plan is opt-in, though fortunately scientists have put tremendous pressure on publishers over the years so that most journals have a form of OA (e.g., OA 6 months after publication – not much help to e-patients).
The business model promoted by Tracz and that has been profitable for his BioMedCentral journals (founded in 2000, now with 180+ OA titles) involves the research institution or the funding source (scientists include the cost in their grant proposal budget) paying for the article. Traditionally, most journals charge a page fee as well as fees for color illustrations, at rates close to the $500 charged by BMC journals for submission (the rate has increased now, but remains much lower than the amount charged by PloS).
Here’s a statement from major UK funder Wellcome Trust:
Jan Velterop, former director and publisher of BioMedCentral and lead crusader for Open Access, has many powerpoint presentations on OA that can be googled and downloaded. Here’s an early presentation that simply and powerfully spells out the costs and benefits.
As testimony to the business model, and indication that the big players are coming ‘round, BioMedCentral was recently purchased by journal publishing giant Springer.
Derk Haank, CEO of Springer Science+Business Media said:
So how much longer will we have to wait for mainstream publishers to jump on board with OA? The results are in; there should no longer be cries for a sustainable business model.
Under Open Access philosophy, Redalyc aims to contribute to the editorial scientific activity produced in and about Ibero-America making available for public consultation the contents of 550 scientific journals of different knowledge areas: http://redalyc.uaemex.mx</a
Redalyc is an online open access library which makes available for its users more than 550 scientific magazines with a total of 119805 wide text articles which can be downloaded, read, criticized and and cited by users.
Hello 2009 commenters! I’m posting this comment to alert you to an update.
Nature re-ignited the access debate when they announced that they will make all their articles “free to view” (but if you read the fine print: it makes the “dark social” practice of #icanhazpdf and other access work-arounds illegal).
To catch up, see my Storify:
Five-alarm fire in Open Access Land.
https://storify.com/SusannahFox/non-scientists-should-care-about-open-access