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

Emily Johnson; Ashley Hyde; Derek Drager; Michelle Carbonneau; Vincent Bain; Jan Kowalczewski; Puneeta Tandon

doi:10.1016/j.pecinn.2023.100201

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

PEC Innov. 2023 Aug 26:3:100201. doi: 10.1016/j.pecinn.2023.100201. eCollection 2023 Dec 15.

Authors

Emily Johnson¹, Ashley Hyde¹, Derek Drager², Michelle Carbonneau¹, Vincent Bain¹, Jan Kowalczewski³, Puneeta Tandon¹

Affiliations

¹ Division of Gastroenterology (Liver Unit), University of Alberta, Edmonton, AB, Canada.
² Patient Advisory Team (PAT), Cirrhosis Care Alberta, Canada.
³ Neuroscience and Mental Health Institute, University of Alberta, Edmonton, AB, Canada.

Abstract

Objective: To describe the development of multimodal, web-based educational resources about cirrhosis alongside patients and caregivers.

Methods: We 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.

Results: This 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.

Conclusions: Collaboration 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.

Innovation: This 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.

Keywords: Caregiver education; Cirrhosis; Patient education; Patient website; Patient-oriented research.