Open science is one of the most important driving forces helping to develop the publishing field, which extends the principles of openness to the whole research cycle and aims to make science more accessible and transparent. There are many different elements to open science, with open access and open data being some of the most well-known. However, over the last 10-to-15 years one of these elements has really gained momentum: citizen science.
Citizen science is about involving and engaging patients and the public with scientific research at all stages of the research cycle. Key examples include initiatives such as James Lind Alliance working with patients to identify their priorities for future research, patient involvement in assessing funding applications for new research (example here and here), and empowered online patient communities engaging with published research for their own treatment plans.
Patient involvement and academic journals
Academic journals are the gate keepers of new research, research directly intended to improve patients’ lives. Therefore, ensuring the research published in these journals is understandable, relevant and accessible to patients and the public is key to facilitating their engagement.
Open access has been fundamental to this, making articles freely accessible to everyone, including patients and the public. Some journals have gone one step further here, publishing plain English summaries alongside articles to help increase the understanding of a paper for a non-specialist scientist (e.g. here and here).
As patient review in academic journals is new, in 2017, Research Involvement and Engagement and The BMJ partnered up to find out how patients involved in peer review in these two journals found the experience and what their motivations were for being involved.
Over the last few years a handful of journals have been innovating in this space. In 2015, BMC launched the world’s first co-produced journal, Research Involvement and Engagement, which considers articles on patient and public involvement and engagement in health and social research, with an Editorial Board that is equally representative of all key stakeholders. All submissions to the journal are peer reviewed by patients and academics and are edited by a patient and an academic Editor pair, who have equal weight in editorial decisions. The British Medical Journal (The BMJ) has a Patient and Public Partnership, which aims to make patient partnership embedded within the journal and includes patient review for relevant research papers. And Cochrane has a Consumer Network that also incorporates consumer review into the processes of a Cochrane review.
As patient review in academic journals is new, in 2017, Research Involvement and Engagement and The BMJ partnered up to find out how patients involved in peer review in these two journals found the experience and what their motivations were for being involved (Disclaimer: I am part of this research team and the main publishing contact for Research Involvement and Engagement at BMC). The full results of this survey have been published in BMJ Open.
We found that the main motivation for patients to accept a review invitation was to add the patient voice.
We found that the main motivation for patients to accept a review invitation was to add the patient voice. We were pleased to hear that 81% (n=157) would recommend being a patient reviewer to others, and 92% (n=157) thought more journals should adopt patient review. It was promising that 81% (n=224) of respondents did not have an issue with open peer review (being named as a reviewer and having their reports posted alongside published articles), which is another element of open science and the peer review system that Research Involvement and Engagement and The BMJ operate.
What’s next for patient involvement and engagement in academic journals?
This is a new area for journals to be innovating in and we are now getting to the stage where we have enough experience to begin building an evidence-informed infrastructure. The patient reviewer survey was full of a wealth of feedback and ideas on how we can develop, and is an important step in this journey.
This is a new area for journals to be innovating in and we are now getting to the stage where we have enough experience to begin building an evidence-informed infrastructure.
To coincide with the patient reviewer survey, Research Involvement and Engagement has today published an Editorial outlining our short-and-longer-term plans to use this feedback to develop the experience of patient reviewers within the journal. These fall into four main categories; improving guidance and training (see our brand new reviewer guidelines), updating processes and workflows, acknowledging patient reviewers, and working towards developing more of a sense of community for our reviewers.
We are excited that we don’t need to wait long until the next step in this journey: Research Involvement and Engagement, The BMJ and Cochrane are collaborating on a workshop at the Cochrane Colloquium 2018 titled ‘Consumer involvement in the editorial processes of health research journals: how we can learn from one another and embed good practice’ where we aim to discuss pillars that might help develop a common framework for patient review in academic journals (if you are attending the Cochrane Colloquium we would love to see you there!).
We are also delighted that we are able to share the patient reviewer survey results and Research Involvement and Engagement Editorial during this year’s Peer Review Week, which has the very relevant theme of diversity and inclusivity in peer review. We believe that patient review is an important aspect of diversity in peer review; it facilitates open science and helps increase value in research through a wider assessment of relevance, acceptability, appropriateness and robustness (as detailed in the Editorial).
This is a developing area and if anyone has questions, comments and/or feedback on anything in this blog, we would love to hear from you!
I would like to thank our patient reviewer survey team, including Sara Schroter (BMJ), Amy Price (BMJ Patient Editor), Andrew Demaine (patient and public reviewer), Jim Elliott (patient research advocate and Editorial Board Member of Research Involvement and Engagement), Rebecca Harmston (patient and public reviewer), Tessa Richards (BMJ), Sophie Staniszewska (University of Warwick and co-Editor-in-Chief of Research Involvement and Engagement) and Richard Stephens (Patient-co-Editor-in-Chief of Research Involvement and Engagement).