Understanding the use of heart failure online health forums: a qualitative study

Aims Heart failure is a major public health challenge and is described as an epidemic. Many people resort to the internet as a source of health information and online health forums have become an increasingly common way to obtain information and support regarding health-related issues. This study aims to explore what information people concerned about heart failure seek from online health forums, and how this shapes decision-making, trust, and interactions with healthcare professionals. Methods and results Widely available internet search engines (Google, Yahoo, and Bing) were used to identify online health forums, accessed by people seeking information on heart failure. Comments posted between 2016 and 2019 were screened, downloaded, and analysed thematically. Normalization Process Theory provided the underlying conceptual lens to inform analysis. Ten online health forums were identified, and 204 individual posts analysed. Three themes were identified [(information and support needs; online diagnosis; and relationship with healthcare professionals (HCPs)]. The most common purpose for using online health forums was to plug information/knowledge gaps surrounding diagnosis or treatments (e.g. discussion of results, medication/health insurance queries). They were used as a tool to aid decision-making regarding, (i) whether to seek further medical attention and (ii) lifestyle choices, medications, and other advice surrounding concerns. Negative experiences with HCPs were discussed, and sometimes online health forums appeared to promote distrust with HCPs. Conclusion Online health forums offer a supportive platform and help fill key informational gaps. However, online forums may amplify distrust with HCPs.