Objectives: We aimed to gather multi-stakeholder insights on key issues relating to plain language summaries (PLS) of company-sponsored medical research to inform future industry recognized guidelines.
Methods: We identified diverse stakeholders based on expertise, familiarity with PLS, and geographical location. A Working Group (n = 11) with extensive expertise in PLS developed an initial list of 14 questions relating to PLS, which were shared with stakeholders. We used a modified Delphi approach to prioritize the 10 key questions that were then used to structure stakeholder discussions to collect evidence on the key challenges and opportunities to inform best practice for PLS.
Results: Overall, 29 stakeholders took part in the study, representing different professional sectors and geographies. There was strong alignment among stakeholders on the priority questions for PLS, with high response rates for both surveys (69% and 90%). Moderated online sessions were attended by 27/29 stakeholders and opportunities to improve PLS uptake were highlighted: developing industry-wide PLS guidelines would help define and maintain quality, including having a clear directive for when publications should have a PLS; further advocacy is needed by target audiences to ensure PLS become an established part of company-sponsored research publications; a searchable repository could facilitate discoverability and broad dissemination of PLS to multiple target audiences.
Conclusions: Key issues identified by stakeholders provide broad insights into the real and perceived barriers relating to PLS uptake. Each emerging theme presents a possible action that could accelerate PLS uptake and facilitate sharing of new medical research with lay audiences.
Keywords: Best practice; company-sponsored medical research; medical/scientific communications; plain language summary.
What do you need to know?: Plain language summaries (PLS for short) explain medical research in a clear and understandable way. We found ways to improve how PLS are developed to help people understand medical research publications. See Additional file 1 for a graphic PLS.
Why did we do this study?: Many people struggle to understand medical research because authors use complex words in research publications. Currently, PLS vary in style and format and most research publications do not have a PLS.
What did we do?: We invited 29 experts from various organizations who develop, publish, read, or fund PLS to take part in this study. We asked them what issues they thought are preventing research publications from having a PLS, and how we could solve these issues.
What did we find?: Most groups agreed on the top 10 issues we need to look at to improve PLS so that more publications have a PLS. There are several ways to improve how PLS are developed. Guidelines on which publications should have a PLS and what they should include are urgently needed. People who think PLS are important need to request them to help make sure they are regularly included in research publications. We also need clear ways to share PLS, so people with an interest in medical research can find and read them.