Lauren Maggio, Laura Moorhead, Juan Alperin, and I recently blogged a small study on the relationship between health journalism and biomedical research in the digital age of growing open access to research. We scraped those news stories in 2016 that had “cancer” in their headlines and included a link to a research article. The good news is that 67,236 news stories on cancer had such links to 11,523 different journal articles. Since the access to research articles in the days of printed newspapers, as much as I miss that era (having recently cut the paper tie), was essentially zero, this has to count as a huge upgrade in the educational and evidential quality of public culture.
On the other hand, we found that access to 60 percent of the research articles was effectively blocked by a paywall that required a credit card with charges as high as $50 to get over (with the figure rising to 63 percent of articles for the most popular articles, which were mentioned in fifty or more news stories). This denial of public access is recognized as fundamentally wrong by Canadian Institutes of Health Research (CIHR) in Canada, as well as by other research funding agencies around the world, as reflected in their policies requiring public access to the research they fund. These policies, however, allow publishers an initial twelve-month embargo on public access, intended to ensure that research libraries continue subscribing to the journals in which the research appears. Almost 25 percent of the research in the news stories in our study was published within a day of the story, with 50 percent within two weeks, and 75 percent within three months.
Physicians, health care workers, concerned and informed patients, families, and advocacy organizations might all be thought to have certain information rights that extend to more than 40 percent of the research cited in news stories (with an earlier study of ours establishing the reality of the paywall as a barrier for physicians at least). The publishers of this research recognize that there is an issue. Four years ago, they set up CHORUS (Clearinghouse for the Open Research of the United States) to find “a sustainable solution for agencies and publishers to deliver public access to published articles reporting on funded research.” As it is not clear how long their search for a healthy business solution will take, it seems reasonable to ask — in the balance of private and public rights around intellectual property — whether their search should continue to impede public access to the body of research behind breaking stories about cancer and other health issues.
To put this in a human rights context, asking people (including their physicians) to wait for up to a year before accessing newsworthy cancer research — to ostensibly protect publisher business models — seems contrary to “the right of the individual to life, liberty, security of the person,” to cite the Canadian Bill of Rights. Now, I realize that same clause of the bill also recognizes the publishers’ right to the “enjoyment of property.” While denying people access to health information may drain some of ownership joy (assuming publishers are the rightful owners of publicly funded research), there are three more practical points to consider in the balancing of rights between people and property: only a small proportion of biomedical articles makes the news; second, that most of these articles are required to be made free with 12 months of publication due to public funding; and third, there is no evidence that a 12-month embargo is necessary for retaining library subscribers (with Kamran Naim’s forthcoming dissertation to include a library survey suggesting their willingness to support complete open access).
Further to this question of information rights, an appeal can be made, if not to the Canadian Bill of Rights, then to the European Convention of Human Rights. It states, in its article 10 on freedom of expression, that “this right shall include freedom… to receive and impart information and ideas without interference by public authority and regardless of frontiers.” A number of cases in this European context have set the public interest in freedom of expression over copyright claims.
In an age of misinformation and fake news, it seems all the more reasonable to ask a government agency, such as CIHR (as well as its counterparts elsewhere) to make a no-embargo exception in proving the public with access to the reliable sources behind news stories bearing on their health. By the same token, an industry group like CHORUS should be encouraged to seize this good-will opportunity to ensure public access in such cases. If you happen to agree, why not drop a line to CIHR at firstname.lastname@example.org and/or to CHORUS executive director Howard Ratner at email@example.com?