The Open Pharma recommendations for plain language summaries of peer-reviewed medical journal publications have been a work in progress for nearly a year for the Open Pharma Accessibility workstream.
Now, hear from the authors of the recommendations on their motivations for getting involved in this initiative and why they believe the recommendations are needed. The opinions presented below are those of the individuals and not of their respective affiliations.
“As the parents of a child with a life-altering condition, my wife and I have seen first-hand how medical breakthroughs have positively impacted our son’s quality of life. Following the diagnosis, we did our research and were initially resigned to the standard of care. The published medical literature, though it existed, was not easily discoverable and when it could be found was often difficult to understand. However, a chance interaction through social media introduced us to an innovative treatment option and empowered us to advocate on our child’s behalf. We have been fortunate, but the experience reinforced the importance of discoverability and clarity of medical literature. I believe plain language summaries are a crucial step toward addressing these challenges – promoting equity and reducing healthcare disparities.”
Adam Watson, Director for Global Data Dissemination and Transparency, Pfizer
“I feel very strongly that we have an obligation within the pharmaceutical industry to ensure equal access to company-sponsored research through both open access publication and the inclusion of a plain language summary (PLS). Since joining UCB in 2016, I have been responsible for developing our PLS framework which provides guidance on how to include a PLS with a peer-reviewed publication. I hope that these recommendations for PLS of peer-reviewed medical journal publications developed by the Accessibility workstream within Open Pharma will encourage the widespread adoption of PLS by both the pharmaceutical industry and publishers.”
Linda Feighery, Healthcare Systems Implementation Lead, UCB
“As a rare disease patient, self-advocacy was one of the most important skills I needed to access diagnosis and care. Having an academic, scientific background granted me a certain level of insider knowledge, allowing me to arm myself with medical literature and clinical checklists to support my diagnosis. However, this isn’t always representative. I’ve seen first-hand just how much my community needs novel medical and scientific research information to be available in accessible language, and how healthcare professionals often lack the language to effectively convey medical and scientific concepts to their patients. I believe plain language summaries are an excellent, straightforward tool to help address this ‘linguistic [in]equity’, and for me, developing the Open Pharma recommendations in the hopes of improving the quality and uptake of plain language summaries was a natural next step in my own patient journey.”
Adeline Rosenberg, Medical Writer, Patient Engagement Team, Oxford PharmaGenesis
“I believe that everyone should have access to information about medical research in a language which is understandable to them. Scientific publications focus on the scientific community and use technical terminology which makes them less accessible to a non-expert audience. This is why I am passionate about making plain language summaries of publications a standard feature to accompany the scientific publication for the benefit of patients, caregivers and everyone else interested in medical research.”
Rikke Egelund Olsen, Senior Healthcare Communications Leader, Global Medical Affairs, Roche
“Having lived and worked on three continents, I know how easy it is for things to be lost in translation, particularly when communicating informally. I am delighted that the Open Pharma recommendations highlight the importance of writing plain language summaries for publications so that they can be translated easily, and formatting them in a way that can easily be read and automatically translated.”
Chris Winchester, Chief Executive Officer, Oxford PharmaGenesis
“As well as being read by specialists, scientific and medical articles are now seen by non-specialists, patients, caregivers and many other invested or interested people. With the open access movement driving free availability of research results in peer review journals, this trend will grow. There is more reason than ever before to ensure that all publications are easy to understand – one way of doing so is to always include a plain language summary. At Ipsen, patients inspire us to tackle some of the most difficult diseases. We are keen to work together as an industry to improve practices and make scientific information available to everyone. We hope that these first ever published recommendations will help trigger the routine publication of plain language summaries alongside medical journal articles.”
William Gattrell, Senior Manager, Global Medical Publications and Communications, Ipsen
“Journals, funders, government, the general public, we all look at complex work and ask: ‘so what? Whether it’s called an executive summary, research in context, a lay summary, or something else, we want a simple, short of the meaning of the work. And for pharma-funded research in particular, I want to see the authors of the academic paper, the world’s main medium for original scientific knowledge, take responsibility for spelling out that meaning, peer-reviewed alongside the data and analysis that support it. This will help us trust the research, its meaning and its value. The open science movement has won the argument that everyone should be able to see the results of research, and medical research in particular. Now, I believe if we’re publishing peer-reviewed articles open access for the world to read, providing a summary that people can understand is just the responsible thing to do.”
Tim Koder, Communications Director, Oxford PharmaGenesis
“I am fascinated by how advances in medical research are helping patients and their families. However, science has its own language that is not easily understandable and not just to the general public, but also to other healthcare professionals who may not be experts on a particular subject. My passion is to communicate science in an understandable manner to scientific audiences. In the past, I was working in vaccine research and I realized very quickly how difficult it can be to ‘translate’ highly scientific language for non-scientific audiences. Therefore, I was very excited to work on our recommendations for plain language summaries that I see as a natural step to expand general understanding of medical science.”
Slávka Baróniková, Scientific Publications Lead (Director), Galápagos
