Accepted for/Published in: JMIR Formative Research
Date Submitted: Jun 5, 2020
Date Accepted: Nov 15, 2020
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Developing a decision aid and planning tool for family-building after cancer: Initial steps to consider when designing a prototype
ABSTRACT
Background:
An important aspect of patient-centered care involves making sure patient directed resources are usable, understandable, and responsive to patients’ needs. User-centered design refers to an empathy-based framework and iterative design approach for developing a product or solution based on in-depth understanding of users’ needs, values, abilities, and limitations.
Objective:
This study presents the steps taken to develop the prototype for a patient resource for young women who have completed gonadotoxic cancer treatment to support their decision-making about follow-up fertility care and family-building.
Methods:
User-centered design practices were used to develop Roadmap to Parenthood, a decision aid website for family-building after cancer. A multidisciplinary steering group was assembled and provided input. Guidelines from the International Patient Decision Aid Society and the Ottawa Decision Support Framework were used throughout the development process. Guidelines for developing health decision aids with respect to patient diversity and health literacy were also followed.
Results:
The Roadmap to Parenthood decision aid website prototype was developed systematically and iteratively. An extensive process of designing and developing solutions from the perspective of the end user was followed. Steps taken included formative work to identify user needs, determining goals, format, and delivery, design processes (e.g., personas, storyboards, information architecture, user journey mapping, and wireframing), and writing content. Additional design considerations addressed the unique needs of this patient population including the emotional experiences related to this topic and decision-making context in which decisions could be considered iteratively involving a multistep process.
Conclusions:
The design strategies presented describe important steps in the early phases of developing of a user-centered resource, which will enhance the starting point for usability testing and further design modification. Future research will pilot test the decision aid and planning tool and evaluate improvement in decisional conflict regarding family-building after cancer. Consistent with a patient-centered approach to health care, strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement.
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