Designing With, Not Just For: Lessons from Inclusive Co-Design

I had the opportunity to attend a compelling presentation hosted by the Center for Technology and Behavioral Health (CTBH) Dartmouth titled "Inclusive by Design: Examining Community-Engaged Approaches for Digital Health Co-Design with Historically Marginalized Populations." Presented by Dr. Terika McCall and Dr. Teresa Kenyon O’Leary from Yale, the session delved into the critical importance of involving communities—especially those often underrepresented—in the design of tools and interventions intended for them. The parallels to my own experiences as an instructional designer for degree programs were immediately apparent.

Centering the Experts: Key Takeaways from the Tutorial

The core message of the tutorial revolved around participatory design and co-design. The presenters highlighted a common pitfall in digital health: researchers often design for marginalized communities without including them sufficiently in the early stages. This can lead to ineffective solutions with low engagement, poor outcomes, or even worsening health disparities.

The alternative? A community-engaged approach that:

1. Recognizes Community Members as Experts: Participatory design views end-users as "experts by experience," empowering them to actively shape solutions that address their identified needs.
2. Emphasizes Early & Collaborative Engagement: Moving beyond later-stage feedback, the tutorial stressed involving users from the initial problem definition phase through co-design workshops where researchers and community members design together.
3. Utilizes Creative Methods: Several novel methods were introduced:
   • Affinity Diagramming: A collaborative brainstorming technique where participants generate ideas (e.g., on post-it notes) related to prompts and then group them into conceptual categories. This was used in one case study to define prompts for the PhotoVoice activity.
   • PhotoVoice: A powerful method where participants take photographs representing their experiences related to specific concepts (generated through affinity diagramming in the case study). These photos then become catalysts for discussion and narrative building, ensuring the community's perspective is central.
   • Care Pathways: A novel card game developed by the presenters to facilitate co-design sessions, particularly with multiple stakeholder groups (like patients and clinicians). It uses different card decks (Situations, Techniques, Supporters, Technologies, Idealized Futures) to scaffold brainstorming about potential solutions.
4. Acknowledges Challenges: The presenters also addressed practical challenges like recruitment, workshop planning, mitigating "techno-solutionism" (the belief that technology alone is the answer), and ensuring findings are disseminated back to the community.

Connecting Co-Design to Instructional Design

Hearing about these approaches resonated deeply with my own experiences. As instructional designers, we strive to create effective learning experiences for faculty and students. I've often sought feedback from these stakeholder communities through surveys and focus groups, recognizing that their input is crucial.

The CTBH tutorial offered valuable perspectives on potentially deepening this engagement:

• Beyond Feedback to Co-Creation: While surveys and focus groups are useful, the participatory methods discussed, like Affinity Diagramming and PhotoVoice, offer ways to bring faculty and students into the design process much earlier and more collaboratively. Imagine using Affinity Diagramming to brainstorm course structure needs or PhotoVoice to understand student experiences within a learning environment.
• Faculty and Students as "Experts by Experience": The tutorial reinforced the idea that our end-users possess unique and invaluable expertise based on their lived experiences within the educational context. Shifting the framing from soliciting feedback to actively co-designing with these experts could lead to more relevant, engaging, and effective degree programs.
• Adapting Methods: While designed for digital health, methods like Care Pathways spark ideas. Could a similar structured brainstorming activity help faculty and students map out ideal learning journeys or support structures within a program?

Moving Forward

The "Inclusive by Design" tutorial was a powerful reminder that designing for a community is not enough; we must design with them. By embracing participatory principles and exploring creative, collaborative methods, we can ensure the solutions we create—whether digital health tools or degree programs—are truly responsive, effective, and centered on the needs and expertise of those they aim to serve. The insights gained will certainly inform how I approach engaging stakeholders with participatory design strategies in my future instructional design work.