Plain Language Summaries Improve Access to Medical Research

Cancer Commons helps people make sense of the latest research on treatments for their distinct type of cancer. Meanwhile, a growing number of research papers now include a plain language summary (PLS)—an overview of the paper written for anybody to understand. Here, our Curious Dr. George discusses plain language summaries with Adeline Rosenberg, MSc, Senior Medical Writer at the healthcare communications company Oxford PharmaGenesis, and Chris Winchester, DPhil, Chief Executive Officer at Oxford PharmaGenesis.

Curious Dr. George: Patients and the public are very interested in the results of much clinical research. In the internet age, many medical articles intended for a research or physician audience are available open access. Yet, even structured abstracts may be difficult to understand. Some journals are now including plain language summaries (PLS) written by the authors. Can you tell us about this movement?

Adeline Rosenberg, MSc, and Chris Winchester, DPhil: Open-access publishing has been a pivotal step in the open-science movement, ensuring that peer-reviewed evidence of the highest quality is available to anyone who needs it, anywhere in the world. Research foundations and charities have taken the lead in funding transitions to open access, with pharmaceutical companies following in their wake.

The logical next step is to make sure that peer-reviewed evidence is understandable by all—this is an area in which pharmaceutical companies are leading the way. Article-associated plain language summaries (PLS) are elements of peer-reviewed journal articles written in jargon-free, accessible language for anyone to read—from patients, policymakers, and the public to non-specialist or time-poor researchers and clinicians. By communicating in a way that is understandable by all, PLS provide equity of information and a basis for shared decision making.

PLS are particularly important in cancer care, where the pace of scientific discovery and the expanding range of treatments can be overwhelming. PLS give clinicians, policymakers, patients, and caregivers the tools they need to empower patients and make decisions about patient care together.

As you can imagine, with a practice that’s still evolving, there is a variety of opinions on what works best. Some journals offer different formats of PLS, such as videos and infographics. Increasingly, journals are publishing short, text-based PLS, which can be indexed on directories such as PubMed alongside the abstract (such as in this cancer research paper). PLS need to be discoverable in order to be found and used, and indexing on PubMed is a great way of optimizing this.

Besides format, there are other PLS aspects on which a clear consensus is beginning to emerge. For example, many people involved in scientific publishing believe that PLS should be an integral part of each journal article and included in the peer-review process for reliability and credibility; that PLS development should involve the authors of the journal article for scientific accuracy and consistency with the overall message; and finally, that drafts of PLS should be user-tested with the target audience to help ensure that they are fit for their purpose and meet end-user needs.

Fortunately, many complementing projects are working towards developing consensus on best-practice guidelines. These include the Patient Focused Medicines Development initiative and the International Society for Medical Publication Professionals’ PLS Perspectives Working Group to name a few. Open Pharma (a collaboration facilitated by ourselves and colleagues at Oxford PharmaGenesis) contributed by publishing our recommendations, which were supported by a commentary on the value of standardizing publishing practices. One pharmaceutical company active in oncology, Ipsen, has even introduced a policy to include PLS in all journal articles reporting Ipsen-sponsored research involving human data. This represents a heartening commitment to transparency and trustworthiness.

As PLS grow in popularity, we hope to see more journals encouraging (or even requiring) the inclusion of PLS, more authors producing them, and more readers engaging with and advocating them. You can join the conversation on social media using #PlainLanguageSummaries—we look forward to hearing from you!

Rosenberg can be reached at adeline.rosenberg@pharmagenesis.com and Dr. Winchester at chris.winchester@pharmagenesis.com.