Participatory design of bodysymptoms.org: An interactive web resource to explain multisystem functional somatic symptoms.

ABSTRACT

OBJECTIVE: There is a lack of trustworthy information about Functional Somatic Symptoms (FSS) on the internet. This means integrative bio-psycho-social explanations of FSS and related health advice are not readily available to the public. To explore and address this problem, we carried out the bodysymptoms project, with the aim to build a website which presents current widely accepted explanations for FSS and shows how different explanations are inter-connected. METHODS: Bodysymptoms was set up as a research-in-action project with a diverse range of international stakeholder-participants, combining approaches from patient and public involvement in healthcare with participatory design. 7 participants with lived experience of multi-system functional symptoms took part in the project and measures of meaningful engagement throughout the project were rated highly. This manuscript describes the methodology by which the website was developed. RESULTS: Through iterative cycles we determined the requirements for an interactive explanatory model and co-created a novel online health interactive resource with integrated actionable health advice. The target end user are young adults with persistent physical symptoms, maintained by functional mechanisms. The overall aim is to empower people at risk of developing functional disorders to seek better health outcomes. The website is intended to be used prior to or alongside engagement with healthcare. CONCLUSION: Bringing lived experience and multi-disciplinary perspectives into dialogue through participatory design can harness the power of research to create immediate shared value. This project has resulted in a usable open access website, bodysymptoms.org, which provides education about FSS for patients, healthcare professionals and members of the public looking to understand FSS.