Feeling better on hemodialysis: user-centered design requirements for promoting patient involvement in the prevention of treatment complications

Matthew A Willis, Leah Brand Hein, Zhaoxian Hu, Rajiv Saran, Marissa Argentina, Jennifer Bragg-Gresham, Sarah L Krein, Brenda Gillespie, Kai Zheng, Tiffany C Veinot, Matthew A Willis, Leah Brand Hein, Zhaoxian Hu, Rajiv Saran, Marissa Argentina, Jennifer Bragg-Gresham, Sarah L Krein, Brenda Gillespie, Kai Zheng, Tiffany C Veinot

Abstract

Objective: Hemodialysis patients frequently experience dialysis therapy sessions complicated by intradialytic hypotension (IDH), a major patient safety concern. We investigate user-centered design requirements for a theory-informed, peer mentoring-based, informatics intervention to activate patients toward IDH prevention.

Methods: We conducted observations (156 hours) and interviews (n = 28) with patients in 3 hemodialysis clinics, followed by 9 focus groups (including participatory design activities) with patients (n = 17). Inductive and deductive analyses resulted in themes and design principles linked to constructs from social, cognitive, and self-determination theories.

Results: Hemodialysis patients want an informatics intervention for IDH prevention that collapses distance between patients, peers, and family; harnesses patients' strength of character and resolve in all parts of their life; respects and supports patients' individual needs, preferences, and choices; and links "feeling better on dialysis" to becoming more involved in IDH prevention. Related design principles included designing for: depth of interpersonal connections; positivity; individual choice and initiative; and comprehension of connections and possible actions.

Discussion: Findings advance the design of informatics interventions by presenting design requirements for outpatient safety and addressing key design opportunities for informatics to support patient involvement; these include incorporation of behavior change theories. Results also demonstrate the meaning of design choices for hemodialysis patients in the context of their experiences; this may have applicability to other populations with serious illnesses.

Conclusion: The resulting patient-facing informatics intervention will be evaluated in a pragmatic cluster-randomized controlled trial in 28 hemodialysis facilities in 4 US regions.

© The Author(s) 2021. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Figures

Figure 1.
Figure 1.
Study research design.
Figure 2.
Figure 2.
Panel A (left) patient illustration of dialysis patients checking in with and listening to one another using technology. Panel B (right) patient illustration of intervention interface with patients and peer mentors sharing health and nonhealth related information.
Figure 3.
Figure 3.
Patient-FG1-P7contrasts how others might see her—as helpless or sad—with how she wants to be seen—as joyful and strong (Panel A). Patient-FG1-P1 drawing offering encouragement to build confidence and hope (Panel B).
Figure 4.
Figure 4.
Peermentor-FG1:1-P4 drawing showing flower and garden motifs to affirm life and promote positive emotions (Panel A). Patient-FG-P8 drawing shows desire for an intervention that would help attain respectful, high-quality care (Panel B).
Figure 5.
Figure 5.
Patient-FG1-P4 drawing showing “My Health” as an important topic to discuss with mentors (Panel A). Or Patient-FG1-P7 showing choices of topics and goals (Panel B). Patient drawing showing topics important for having safer sessions (Panel C).
Figure 6.
Figure 6.
Conceptual model for patient intervention linking design principles and recommendations to psychosocial and behavioral outcomes.

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