When it comes to clinical research, the participation of the people being treated—the patients—usually ends by the time the study is submitted to a journal. A few U.K.-based publishers are now looking to change that. Last month, BioMed Central, an open-access publisher, announced that in 2015 it will launch the journal Research Involvement and Engagement, which will closely collaborate with patients in all aspects of its editorial processes, including peer review.
Reflecting this unorthodox approach, the journal will have joint editors-in-chief, with Sophie Staniszewska of the University of Warwick, who leads the Patient and Public Involvement Research Programme at the Royal College of Nursing Research Institute, joining forces with Richard Stephens, who has become a well-known patient advocate in the United Kingdom, having survived two cancers and other serious medical conditions. The journal also plans to have joint peer review, with each article typically being reviewed by at least one academic and one patient. “We wanted to send a signal to the community that active collaboration [between academics and patients] is a vital part of high-quality research,” Staniszewska says. Stephens adds: “More and more of us [patients] are becoming increasingly involved in academic health research.”
The new journal aims to capture the contributions of nonacademics to scientific research; according to Stephens, academic evaluation of public and patient involvement in science has been conducted for many years, but no journal was devoted to the theme, commonly known as PPI. The backers of the new journal point to a 2010 paper in Health Expectations as the type of work they hope to publish. The study offered guidelines for appraising the quality and impact of user involvement in published papers and grant applications. The guidelines represented a collaboration between patients and academics—several authors were patients. But according to Daniel Shanahan, associate publisher for medical evidence at BioMed Central in London, the study would have benefited from patient peer review. “In the case of this article, a lay reviewer would have been able to offer valuable insights as to the quality and potential impact of user involvement, which would help improve the overall quality of the article,” he suggests.
But will patients be able to review scientific papers that require technical knowledge? “We will select patient reviewers to look at a particular paper depending on their area of expertise, which often links to the [medical] experiences they have had,” Staniszewska asserts. Having experienced a certain medical condition makes patients “lay experts” for that condition, and the journal aims to benefit from this, she says. To help Biomed Central and others evaluate the success of the new approach, the journal aims to make all reviews of its accepted papers freely available online. “We think we are adding value, but we are still wrestling to capture how we are adding value and how you might apply what we’ve done in a particular example in another example,” Stephens says. “This open peer-review process will allow us to judge how we are doing … as much as it allows us to judge the research itself.”
Research Involvement and Engagement is not the only journal that is embedding patient peer review into its editorial processes. The BMJ started to incorporate the views of patients last year and has published guidelines for patient peer reviewers on their website. “The BMJ believes that patient peer review of research papers is an important adjunct to the normal process of peer review where papers are sent to clinical experts and statisticians,” says Tessa Richards, who is the patient partnership editor at The BMJ in London. “We are not looking for them to comment on the scientific reliability of the paper or its originality or importance to clinicians, but to tell us if the research question addresses an issue which is important to them as patients.”
Stephens says the new Biomed Central journal will have a similar approach, allowing researchers to comment on the “robustness” of methods, statistics, or data, and patients to focus on the applications, offering comments on whether the work may be useful in other global initiatives, for example. Patient reviewers will, however, be allowed to also comment on the data, methods, or statistics if they have the technical knowledge to do so.
Stephens pointed out that “academics” and “patients” often overlap. Many clinical researchers have their own medical issues, obviously, and patients often have jobs that require technical skills such as statistics, which would be useful when reviewing papers. “There are an increasing number of patients who are co-authoring academic research papers, co-designing trials and studies, and joining trial management teams,” Stephens says. “So there is a skills base that is developing amongst patients around the world, and definitely in the U.K.” Stephens adds that some patients already review clinical trial applications and even assist in drafting academic papers, in order to create a lay summary of them.
Will the journal’s patient reviewers be chosen because of their experience with a particular disease or skills they have, such as statistical knowledge? “At present we are recruiting the lay reviewers from those already involved with, or interested in, research. This is generally done through either direct referral from editorial board members or through patient organizations and charities,” Shanahan says. “We also are looking into putting training into place for lay reviewers in the future, so that they will have a thorough understanding of the issues to consider when appraising articles.” The journal is also creating a template form to help people unfamiliar with the peer-review process.
Stephens is excited about the potential of the new journal. “I actually think this approach will encourage patients,” he says. “Everything we do with the journal is a logical extension of the U.K.’s patient choice agenda—this idea that there is no decision about us without us.”
*Editor’s note: The author worked at BioMed Central from September 2012 until June 2014, but had no involvement with patient peer review or the new journal.