For years many have argued that it’s wrong for research that’s funded by the government (i.e. taxpayers) to be hidden from the people who paid for it (taxpayers) by hiding the results behind paywalls. This tradition not only makes it harder for taxpayers to share in the benefits of what we paid for, it makes it harder for as all to examine, frankly, how good the research was. In other words, what did we get for our money??
For e-patients this is a special challenge, because sometimes our families’ lives depend on what came out of that research. In SPM’s view it’s just plain wrong for publicly funded science to not be broadcast.
At last TED joins the call for data liberación, in this talk from TEDxMileHighWomen. Though it was a TEDx (not a full event), it’s this week’s featured TED of the Week!
Dave,
There are some important pieces of information missing from this woman’s talk related to open access publishing. First, NIH-funded research IS made publicly available in fulltext on PubMed Central. Some publishers impose an embargo of up to 1 year, but the embargo period is shrinking in general.
Also, funders can pay a fee (APC or article processing charge) to have an article that has been accepted by a journal published with no paywall. This has led to what is called hybrid journals that include for-fee and free articles.
With respect to the Open Access movement, which I have been following since at least 2003, the primary outcome has been huge growth in low-value journals that operate on a vanity publishing model, don’t provide peer review or even copy editing services, and publish junk. There is a lot of middle ground with respectable publishers offering open access journals, but they are outnumbered by the so-called ‘predatory’ journals that list editorial boards that don’t exist and solicit articles from anyone whose name they can find who is willing to pay a high APC.
No question, the scholarly publishing field has been slow to adapt to the needs of clinicians and epatients, but their primary market has been academics and researchers, who are still rated on the ability to publish in highly ranked journals (i.e., those with a high Impact Factor). Historically, the end-point for scholarly publishers has been the dissemination of bundles of published articles, but increasingly medical publishers are seeking to meet the needs of clinicians who need decision-support at point-of-care. That’s a big leap for publishers, given their historical skillsets in editorial and publishing functions. But, as they move toward point-of-care (or near point-of-care) decision support, the role of the individual article will shift and I envision articles will become the “news” that is offered for no charge, while systems that ingest the new information and update decision support algorithms accordingly will become the source of revenue. I admit that I’ve envisioned this shift for a loooong time. I still see it happening and the shift will likely accelerate as the health IT segment gets better at incorporating decision support into clinicians’ workflow.
One final comment, most journals will provide free short-term access to patients who are researching their condition, and/or provide a free copy of a specific article or two to patients/caregivers. I think it would be beneficial for SPM to establish relationships with some top medical publishers to expedite requests for access by our members.
Let’s continue this conversation. I didn’t even respond to the position of “if taxpayer dollars helped fund the research, then the outcome of that research should be free” argument. Wouldn’t it be nice if we applied that logic to the Pharma segment?
A belated thanks for this, Janice. Most people don’t know the things you added, except we hear increasingly about junk journals.
But are you saying there’s no junk behind paywalls, or am I misconstruing?
> I didn’t even respond to the position of “if taxpayer dollars helped fund the research,
> then the outcome of that research should be free” argument.
> Wouldn’t it be nice if we applied that logic to the Pharma segment?
Well, YES, IMO! In my view, if Party A hires Party B to do some research, you’re darn tootin’ I want to see every bit of what they created in the process! If they want to KEEP what they did with my funding, then clearly it has some value (or why would they want it), and that should be figured into the negotiation. IMO. Your thoughts?
Dave,
I’m not saying there aren’t any junk articles behind paywalls. Just as in other media segments, the quality varies greatly across journal publishers. Even among the top tier publishers, some bad research may find its way into respected titles.
Problems of quality in the research process extend beyond publishers and many of the issues related to data sharing and quality need to be tackled well before the research is completed and publishers receive a manuscript for consideration.
There are other factors that constrain innovation in the medical/scholarly publishing sector, including the fact that academe still places a high premium on publishing research in a top journal.
My comment re: Pharma was intended to say that if we expect publishers to only cover direct costs — and possibly lose money — on each article published because the research was funded by public funds, shouldn’t we expect Pharma to provide drugs at cost if the R&D was carried out with public funds?
I agree, we need innovation in the entire research process “from bench to bedside” and how information is disseminated matters. But, changes need to occur throughout the system, especially if we want to make progress in creating something akin to a medical learning system.
Changes ARE occurring in scholarly publishing and it’s much easier to find a non-paywall version of articles today, with many of the free versions allowed by commercial publishers. Some of the free versions don’t reflect publisher edits, but may be sufficient for gaining an understanding of the research results.
There’s much more I could say on this topic, but my comment is already too long. As I said, we can keep the convo going–although we don’t have to cover everything in this comment stream!
Janice
Janice, re who pays for what – although it seems common among our peers in such discussions to fling blame, my context for any thoughts is that I get frustrated by anything that holds back human progress especially when lives are at stake. I recoil at the idea that access to new knowledge is withheld for money. I guess I don’t have an easy answer but in principle I’d vastly prefer that funders underwrite the cost of doing a study up front, including “publishing” its findings in one way or another.
I abhor the harmful reality that scientists who do a good solid professional job may be disincented from telling the truth of what happened if it goes against the commercial interests of a funder. I abhor the harmful reality that most studies have never been replicated by another lab, and when the study is replicated later, half the time the result is overturned. (How many “peer-reviewed results” are actually subject to simple regression to the mean?? We call this science??)
Further, I abhor the reality that, as The Reproducibility Project found, most labs doing a study don’t WANT it simultaneously replicated by another lab, because if the second lab gets a different result, the harm is far greater to the first lab than is the possible benefit of having their result confirmed by the second lab. If I were on an NIH advisory board I’d be questioning the funding priorities: I’d say, “If the Reproducibility Project costs 10%, why not mandate it? Would we be happy if suddenly our grants were producing 10% fewer results, but more solid? Or would we rather have 10% more unconfirmed results??”
All in all I’d rather have a more scientifically rigorous system, in which the goal is not just to do studies (come what may), but to increase our knowledge as a society, with funding and social priorities that directly align with that goal.
As I think you know, a key part of my own survival was that my patient community had all kinds of information that wasn’t available to most people. A lot of that was first-hand knowledge, but the same problem exists any time information exists that isn’t available at the point of need.
No easy answers, as I say – I just want to talk about the issues in the hope someone someday will re-optimize the whole system, so the interests of individual scientists and publishers align with the interests of the people for whom the industry exists – the sick people.