Perspectives of people with chronic illness about plain language summaries: a qualitative analysis

People with chronic health conditions tend to look for information from a range of sources. Although information online is accessible, the quality varies and articles in scientific journals are not written for a general audience. Given this, plain language summaries (PLSs) may be a useful source of information, especially for people with chronic medical conditions. PLSs contain reliable information that is written in plain, easy-to-understand language. We investigated the health information-seeking behaviour of consumers with chronic health conditions and sought to understand what they see as important in a PLS with respect to content, design and structure, and the labels used. We conducted semi-structured focus groups and interviews with 19 participants from 6 countries, all with a chronic medical condition. Using reflexive thematic analysis, we developed four themes: (i) 'Accessing information in a competitive landscape of health information'; (ii) 'I really don't see the patient in this at all'; (iii) 'Co-design should be meaningful, not tokenistic'; and (iv) 'A way forward: Approach PLSs with creativity'. Participants highlighted the importance of PLS labels, the need for actionable content, and the recommendation to vary the reading level depending on audience needs. The results of this study suggest that PLSs produced with consumer input could elicit PLSs that better meet audience needs, focusing on information that is actionable, accessible, and written with useful content that is detailed but still respectful of the reader. Consequently, PLSs could become a more useful source of reliable information, particularly for people with chronic health conditions.