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Plain language summaries: enhancing patient-centred care and improving accessibility of health research
  1. Paula Riganti1,2,
  2. Annette Marie McKinnon3,4
  1. 1 The University of British Columbia Faculty of Medicine, Vancouver, British Columbia, Canada
  2. 2 Family Medicine Department, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina, Argentina
  3. 3 Patient Advisors Network, Toronto, Ontario, Canada
  4. 4 Centre for Advancing Collaborative Healthcare & Education, University Health Network, Toronto, Ontario, Canada
  1. Correspondence to Dr Paula Riganti, The University of British Columbia Faculty of Medicine, Vancouver, British Columbia V5Z 1L5, Canada; rigantipaula{at}gmail.com

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Introduction

As part of the Open Science movement, plain language summaries (PLSs) could make scientific research more understandable and accessible to all audiences. They aim to clearly communicate research results without using technical language.1 Regulatory bodies increasingly require these summaries to disseminate clinical studies’ results as part of the efforts to make them more transparent to the public.2 For example, the European Union Clinical Trials Regulation and the Dutch Ethics Committee require clinical trials to provide public summaries adapted for non-medical audiences within 6–12 months after completion. In the USA, the National Institutes of Health promotes broad and transparent dissemination of clinical trial information, and both the Plain Writing Act and Final Rule support plain language in clinical studies.

However, PLS application into practice is still inconsistent, heterogeneous and encounters resistance.3–5 For example, there is no consensus on a common terminology for PLS or where to locate it within the article, limiting its accessibility. Moreover, the summaries do not have a standardised target audience (eg, healthcare professionals and non-experts), and they are written for various reading levels. There are also concerns about their effectiveness, production cost and scalability (eg, if editors, researchers or lay authors should write them).

In this piece, we argue that patients should be the target audience of clinical research PLS, discuss implementation barriers and propose solutions.

Patients as the primary audience

The target audience of PLSs is diverse. It ranges from healthcare professionals, researchers or policy-makers to patients, caregivers or members of the public who are non-experts. We agree with others who have proposed that patients and caregivers should be the primary audience of clinical research PLS because we believe this strategy aligns with the objectives of evidence-based medicine and patient-centred care.6 PLSs have been shown to make research more accessible, understandable and increase knowledge compared with scientific …

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Footnotes

  • Twitter @paula_riganti, @anetto

  • Contributors The idea for this manuscript was collaboratively conceived after iterative exchanges of views between both authors. PR drafted the initial version based on these ideas, except for the personal narrative, which was exclusively written by AMM, sharing her lived experience as a patient. Both authors collaboratively revised and edited the subsequent versions of the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests PR is an associate editor at BMJ Evidence-based Medicine.

  • Provenance and peer review Not commissioned; internally peer reviewed.