Collaborating with patients and caregivers to create web-based educational resources for people affected by cirrhosis

Abstract

ObjectiveTo describe the development of multimodal, web-based educational resources about cirrhosis alongside patients and caregivers. MethodsWe used an iterative process that was guided by the Strategy for Patient Oriented Research (SPOR) patient engagement framework in describing patient engagement activities to partner with a team of 16 patients and caregivers (Patient Advisory Team (PAT)). This process included five phases: a) Prioritize and gather content, b) design and build the website and videos, c) gather and integrate feedback, d) improve user accessibility, and e) assess usability and knowledge uptake for users. ResultsThis 2-year process resulted in a 55-page website and 78 animated and live-action videos on cirrhosis complications, procedures, nutrition, and exercise. We implemented usability testing through pre-defined tasks and a think-aloud method from individuals with no previous exposure to the website to assess navigation, appearance, and content issues. Following usability testing, we have been gathering quantitative data from each unique page about relevance and ease of use, as well as qualitative data on the value of the content itself. ConclusionsCollaboration between clinicians, patients, and caregivers is key to developing high-quality digital educational resources. Lessons from our process may help other organizations looking to address disease-specific knowledge gaps. Next steps with www.cirrhosiscare.ca will be continued iterative refinement and structured impact evaluation. InnovationThis project used a patient-centered approach to develop a comprehensive online educational resource for patients with cirrhosis. By having patients with cirrhosis as a key part of our team, we ensured that the site met the needs of this unique population.