Gainey Karen Maree, McCaffery Kirsten, Muscat Danielle
Sydney Health Literacy Lab, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Corner of Parramatta and City Roads, Camperdown, NSW 2006, Australia.
Health Promot Int. 2025 Mar 5;40(2). doi: 10.1093/heapro/daaf044.
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.
患有慢性疾病的人往往会从一系列来源寻找信息。虽然在线信息很容易获取，但质量参差不齐，而且科学期刊上的文章并非为普通读者撰写。鉴于此，简明语言摘要（PLS）可能是一个有用的信息来源，特别是对于患有慢性疾病的人。PLS包含以简单易懂的语言编写的可靠信息。我们调查了患有慢性疾病的消费者的健康信息寻求行为，并试图了解他们认为PLS在内容、设计和结构以及所使用的标签方面的重要之处。我们对来自6个国家的19名参与者进行了半结构化焦点小组讨论和访谈，他们均患有慢性疾病。通过反思性主题分析，我们形成了四个主题：（i）“在竞争激烈的健康信息环境中获取信息”；（ii）“我在这根本看不到患者的身影”；（iii）“共同设计应该是有意义的，而不是形式上的”；（iv）“前进的方向：创造性地对待PLS”。参与者强调了PLS标签的重要性、可操作内容的必要性，以及根据受众需求调整阅读水平的建议。这项研究的结果表明，在消费者参与下生成的PLS可以产生更符合受众需求的PLS，关注可操作、易获取且内容详细但仍尊重读者的有用信息。因此，PLS可能会成为一个更有用的可靠信息来源，特别是对于患有慢性疾病的人。
