Can Your Doctor See the Cancer Research Reported in the News? Can you?
During last year’s Breast Cancer Awareness month, over 100 international news outlets reported on the New England Journal of Medicine (NEJM) study entitled, “Breast-Cancer Tumor Size, Overdiagnosis, and Mammography Screening” published October 13, 2016. Among the headlines with a link to this research were: “Study Questions Value of Mammograms, Breast Cancer Screening” (ABC News); “Majority of Women with Breast Cancer Get Unnecessary Treatment, Study Finds” (Los Angeles Times); “Do Mammograms Cause More Problems Than They Detect?” (Dallas Morning News).
As important as this study is to warrant such media attention, if the interested public, including your physician, had clicked on the link to the research article in the story to learn more, up popped a request for a $20 payment to see the NEJM article, which was funded by the National Cancer Institute and published by the Massachusetts Medical Society (whose motto is “Every physician matters, each patient counts”).
Inspired by Vice President Biden’s Moonshot Initiative, we asked: How common are such paywalls for the latest research articles on cancer? To find out, we looked at news stories published in 2016 with “cancer” in their headlines that contained a link to a research article. Using data on online media mentions provided by Altmetric, we found 67,236 news stories with links to 11,523 different journal articles. We then used a new service, oaDOI, provided by ImpactStory combined with automated efforts to locate a freely available PDF on the article’s page, to determine the percentage of articles that the public could read without being asked for payment by the publisher*.
Turns out paywalls are not uncommon. The blocked NEJM breast cancer article was not a fluke. For our sample, over 60% of the articles were behind paywalls. This number goes up slightly, to 63% for the articles that are mentioned in 50 or more news stories.
Overall these articles heralded from a variety of sources, including traditional news sources (e.g., New York Times, Washington Post) and online-only new sites, such as Slate, Huffington Post and Vox. For articles behind paywalls, readers are generally given the option to subscribe to the journal, buy the article, or “rent” the article for a specific time period. For purchasing an article, readers can expect fees between $30-$50 per article. Or readers may face a confusing array of price options with off-putting registration and restriction requirements. All this for what should be a simple right of access to research produced within public-sector support.
This is simply too much of a barrier for the general public. Members of the U.S. population have expressed interest in accessing health research, though they remain generally unwilling to pay for it: 82% of adults say they strongly (57%) or somewhat (25%) agree that if tax dollars pay for scientific research people should have free access to the results of the research on the Internet . Still, of the 26% of online health seekers asked to pay for access, only 2% did so .
But that doesn’t mean members of the public don’t want information about biomedical research. Most learn about research “primarily through media,”  with 68% of the estimated U.S. population reading health sections from newspapers and magazines . Pew reports that 77% of the population seeks health information through search engines, which regularly return content by journalists .
Some would say the NIH Public Access Policy, which mandates that NIH-funded research be made publicly available 12 months after publication, alleviates or even solves the issue of pay-for-view taxpayer-financed research. However, the vast majority of news stories appear immediately following publication. In our sample, almost 25% of the stories happen within a day of the article publication, 50% appear within two weeks, and 75% of the stories are published within the first three months of the article’s publication, and 80% of 54,463 stories were about articles published this year — including the NEJM article mentioned above, which was published just last month, and falls well within embargo period permitted by the NIH Public Access Policy.
The issue of biomedical research in the news media highlights a weakness in the policy’s potential to mandate access to information in a timely manner for the benefit of the public. Currently, the 12-month embargo disenfranchises journalists working to make sense of new research while on deadline, physicians needing to stay up to date, and patients wanting to make timely informed decisions about their health alongside medical practitioners.
Given that the NIH spends $32.3 billion in taxpayer funding for scientific research on which these journal articles are based, the free part makes sense, while the embargo, intended to protect publishers’ subscription sales, not so much, especially when the public interest is so clearly at stake. As such, the real question is, What proportion of recent cancer studies are either embargoed or available only at a price?
Moving forward, our research tackles that question empirically. But for now, in this blog post, we’re raising the issue of public access to research and the need for journalists and their audiences to have the opportunity to freely access taxpayer-financed journal articles at the time the new study is published. Health journalism, built solidly from peer-reviewed research, can be a mechanism for the adoption and integration of evidence-based health interventions into clinical and community settings. But that journalism and its potential to better public health are likely to fall short if audiences cannot access the primary research.
Disclaimer: The views expressed in this post are those of the authors and do not necessarily reflect the official policy or position of the Uniformed Services University of the Health Sciences, the Department of Defense or the U.S. Government.
*Data from such a wide range of publishers is inherently messy, and so the oaDOI tool is known to miss a small number of open access articles in journals that generally require subscriptions.