Advanced Kidney Disease Patient Portal: Implementation and Evaluation with Haemodialysis Patients

Citation

Meiklem R, Stevenson K, Richarz S, Kingsmore DB, Bouamrane M, Dunlop M & Thomson P (2021) Advanced Kidney Disease Patient Portal: Implementation and Evaluation with Haemodialysis Patients. In: Ardito C, Lanzilotti R, Malizia A, Petrie H, Piccinno A, Desolda G & Inkpen K (eds.) Human-Computer Interaction – INTERACT 2021. 1 ed. Lecture Notes in Computer Science. Cham, Switzerland: Springer International Publishing, pp. 175-196. https://doi.org/10.1007/978-3-030-85616-8_12

Abstract
Patients on haemodialysis face complex care pathways, a high treatment burden and lower quality-of-life. Working with multidisciplinary domain experts, we have conducted several iterative development cycles to design, develop and evaluate a portal for patients on haemodialysis that can help them better understand and navigate their care pathways. A key functionality of the portal is to improve data and information sharing with clinicians, including on key aspects of quality-of-life through Patients Reported Outcome Measures. A case study was conducted with multidisciplinary experts and patients in the NHS Greater Glasgow and Clyde health board (Scotland), using interviews combined with the System Usability Scale (n = 26). Patients’ feedback and system use observations were used to further refine the system design requirements and functionalities. Key lessons include: a wide preference for tablet-based input vs paper, identification of case-specific accessibility issues and situational impairment, benefits of self-completed digital data collection in overcoming such issues and promoting patient independence and privacy, with considerations for maintaining perceived value and engagement with such systems and when to offer alternatives.

Keywords
Chronic Diseases; Patient Portal; Co-Design of Digital Health