Dormer L., Schindler T., Williams L.A., Lobban D., Khawaja S., Hunn A., Ubilla D.L., Sargeant I., and Hamoir A.M. (2022) A practical ‘How-To’ Guide to plain language summaries (PLS) of peer-reviewed scientific publications: results of a multi-stakeholder initiative utilizing co-creation methodology. Research Involvement and Engagement. 8(1):23. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9164486/
Background: Peer-reviewed scientific publications and congress abstracts are typically written by scientists for specialist audiences; however, patients and other non-specialists are understandably interested in the potential implications of research and what they may mean for them. Plain language summaries (PLS)—summaries of scientific articles in easy-to-read language—are emerging as a valuable addition to traditional scientific publications. Co-creation of PLS with the intended audience is key to ensuring a successful outcome, but practical guidance on how to achieve this has been lacking.
Methods: Building on the Patient Engagement (PE) Quality Guidance previously developed by Patient Focused Medicines Development (PFMD), a multi-stakeholder working group (WG) of individuals with patient engagement experience and/or expertise in PLS was established to develop further activity-specific guidance. PLS guidance was developed through a stepwise approach that included several rounds of co-creation, public consultation (two rounds), internal review and a final external review. The iterative development process incorporated input from a wide variety of stakeholders (patient representatives, industry members, publishers, researchers, medical communications agencies, and public officials involved in research bodies). Feedback from each step was consolidated by the WG and used for refining the draft guidance. The final draft was then validated through external consultation.
Results: The WG comprised 14 stakeholders with relevant experience in PE and/or PLS. The WG developed a set of 15 ethical principles for PLS development. These include the necessity for objective reporting and the absence of any promotional intent, the need for balanced presentation, the importance of audience focus, the need to apply health literacy principles, and the importance of using inclusive and respectful language. The first public consultation yielded 29 responses comprising 478 comments or edits in the shared draft guidance. The second public consultation was an online survey of 14 questions which had 32 respondents. The final ‘How-To’ Guide reflects feedback received and provides a rational, stepwise breakdown of the development of PLS.
Conclusions: The resulting ‘How-To’ Guide is a standalone, practical, ready-to-use tool to support multi-stakeholder co-creation of PLS.
York University’s Knowledge Mobilization Unit (KMb York) wrote about clear language summaries in 2012 which summarized work underway since 2010. Ten years later this paper provides a detailed, stepwise guide for producing plain language summaries (PLS) of published research articles. The process of developing the guide and even each individual PLS is anchored by patient and engagement with other interested parties. This authentic engagement of patients is no surprise since the authors are not academic but are a combination of pharma, patient advocacy organization and what sounds like a consulting firm.
The authors created a working group to inform development of the PLS guide. The working group included patients, pharma, researchers, publishers and contract research organizations. End users of PLS designing a process for creation of PLS.
They also developed a set of principles for developing PLS – take at look at those as they are helpful for research engagement beyond PLS.
The guide for developing PLS has seven steps.
Step 1: Rationale and scope of your PLS
Step 2: Identify your target audience
Step 3: Consider the dissemination channels for the PLS
Step 4: Identify your key stakeholders for co‑creation of PLS
Step 5: Write your PLS
Step 6: Disseminate your PLS
Step 7: Track dissemination and measure success
- Note: The evaluating impact isn’t really seeking indicators of what changed or how the PLS was used. It is more about dissemination and how the PLS was shared. Good, but I have always struggled with evaluating our PLS beyond dissemination metrics as apparently these authors have as well.
Lots of time planning before putting pen to paper (or fingers to keyboard) in step 5. Excellent.
And yes, there is a but, a couple of them.
I wonder if this will work outside of a patient engagement role. Patients are highly invested in their health and are motivated to contribute to research as subjects, patients, co-researchers, advisors etc. I wonder if this would work in a social services setting. Social sector employees don’t have time or compensation to do this work. Clients (homeless, low literacy, low SES, immigrant single parent etc) may be too busy just living to support development of PLS and may not connect the research to positive outcomes for them the way that patients do.
And this is a ton of engagement. It’s great in theory but in practice will this work? Who is going to do the work? Unless a journal requires a PLS then researchers won’t do it. And if the journal does require it the researcher will likely just scratch it out (tick) and not do the deep engagement recommend by this article. A graduate student will need to be paid for writing the PLS but if they are going to undertake the depth of engagement this will be a lot of work that is not driving forward the student’s own research for thesis completion. A post doc won’t do this as it won’t help them get a job that doesn’t require PLS. KMb York hired senior undergraduates to write PLS in social science disciplines and had the journal authors sign off. In one instance of writing PLS for clinicians for kids with neurodevelopmental disorders, the researchers would not accept a PLS that did not provide the same level of rigour as the original paper. And that then is neither plain language nor a summary.
Don’t get me wrong. I celebrate what the authors did as this deep theoretical work, but I wonder if it will translate easily into practice.
Questions for brokers:
- Do you think end users/beneficiaries outside of patients will support PLS development?
- What will it take for this to work in practice?
- What is the motivation for academic researchers to spend their time developing PLS?
Research Impact Canada is producing this journal club series to make evidence on knowledge mobilization more accessible to knowledge brokers and to facilitate discussion about research on knowledge mobilization. It is designed for knowledge brokers and other parties interested in knowledge mobilization.