Advanced kidney disease patient portal : implementation and evaluation with haemodialysis patients

Meiklem, Ramsay and Stevenson, Karen and Richarz, Sabine and Kingsmore, David B. and Bouamrane, Matt-Mouley and Dunlop, Mark and Thomson, Peter (2021) Advanced kidney disease patient portal : implementation and evaluation with haemodialysis patients. In: INTERACT 2021 - 18th IFIP International Conference on Human–Computer Interaction, 2021-08-30 - 2021-09-03.

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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.