THURS-082 - Co-design Best Practices: Learnings from Partnering with Patients to Develop a Shared Decision-making Workbook

Brief Abstract Summary: Explore an evidence-based, six-step process to co-create inclusive, easy-to-understand, and actionable patient education materials. It shares real-world insights from the development of “Taking an Active Role in Decision-Making", a shared decision-making (SDM) workbook developed for people with generalized myasthenia gravis (gMG). Grounded in theory, the workbook was co-created by engaging patients and clinicians from the outset to identify pain points, elevate lived experiences, and test the tone, usability, and emotional resonance through multiple co-creation sessions via one-on-one in-depth interviews and an online engagement platform. The result was an interventional health communication tool co-created with patients that builds confidence and transforms health communication from one-way messaging into a participatory, equity-driven co-design process. High demand led to full distribution of the first print run within weeks and prompted multiple reprints

Detailed abstract description:

Background: The co-design process transforms patients from passive recipients to active partners, defining problems, shaping solutions, and guiding implementation (Zogas, 2024). It is a critical process for developing health communication tools for people with gMG, who often face exclusion, low confidence, and care plans that don’t reflect their goals (Law et al, 2021).
A review by McDonald et al (2023) identifies six co-design best practices: conducting a literature review, adopting a theoretical framework, involving patients from the outset, engaging diverse voices, empowering patients, and using validated evaluation tools. These steps enabled the co-creation of a shared decision-making workbook that bridges the gap between perceived needs and real pain points.

Learning Objectives:
1. Identify the six demonstrated, evidence-based steps for the co-design process.
2. Differentiate between traditional material review and true co-design by assessing the depth of patient involvement and ownership across project stages.
Methodology: Building on the evidence-based six-step process introduced by McDonald et al, (2023), we co-created an interventional SDM workbook for people with gMG, using real-world design decisions to enhance replicability for future health communication interventions. To promote accessibility, we used an asynchronous online platform, which enabled participants to respond at their own pace and helped foster a two-way exchange by which participants could reflect deeply, and investigators could probe meaningfully and adapt in real time.
1. Conduct a literature review: We synthesized studies and interviews to identify gMG-specific SDM barriers between patients and HCPs.
2. Adopt a theoretical framework: We mapped existing SDM barriers to health behavior models and established principles of health literacy.
3. Involve clinical and patient experts from the beginning: We convened 12 stakeholders (people living with gMG, patient advocates, clinicians, and SDM experts) who were engaged throughout the process, from problem definition through final deliverables.
4. Engage diverse perspectives: We assured inclusivity by including participants from diverse geographies, socioeconomic, and racial backgrounds and lived experiences.
5. Empower patients to have the final say: Patients refined the tone, language, and workbook activities based on their lived experiences.
6. Utilize validated measurements: We used an evidence-based tool—Patient Education Materials Assessment Tool (PEMAT)--and qualitative feedback to assess the readability, actionability, and emotional impact of the workbook.
Results and

Discussion: Initial print runs were distributed within weeks, with multiple requests for reorders, highlighting the demand for tools that bridge communication gaps. This project demonstrates how co-design can move health communication from transactional to relational.