Draw-aloud symptom/s: Critical ethnographic design of participatory personal health records for patient agency

Advancements in health data technology have paved the way for compassionate and interoperable Electronic Health Records (EHRs) that can incorporate patient voice, trust, and active ownership, instead of acting as barriers. This mixed-method qualitative design research represents the culmination of my boundary-crossing journey, focusing on both my perspective as patient and provider perspectives, and drawing inspiration from activism to advocate for disability rights in the Do-It-Yourself (DIY) culture. As an 'insider-outsider' researcher, I leverage my personal experience as a person with disabilities, and as my insider-knowledge as an implementer/deployer of institutional-oriented health records systems and secondary research. Introducing my novel Somatic Probe, the "Draw-Aloud Symptom(s)" (DAS) protocol, the aim is to disrupt the prevailing sense of powerlessness and disconnection patients experience in the dominant healthcare landscape. The DAS protocol combines elements of Think-aloud Protocol, the Cultural Probe and arts-based techniques to access individuals' cognition, and enhances intimate, empathic engagements and sensitivity to cultural relevance in the eliciting process for illness experiences. Personal Health Records (PHRs) are owned and hosted by patients themselves. The empirical activity of the DAS protocol encompasses two primary goals: activation and critical design. The DAS protocol is structured for creating a timeline in four chapters PHRs: Back to the body, The Present; The Past; Preparing for the Future. Through the DAS protocol, participants in community, and collaborative autoethnographic design partners, contribute to the researcher's data collection and gain empowerment by creating meaningful pictorial participatory PHRs, which can be boundary objects for coordination and communication with their healthcare providers. The DAS protocol has evolved through design iterations and feedback from Patient Partners of the Patient Voice Network. An intentional design rhetoric, the Elito Method Table, is employed to group themes and linkages among observations, insights, critical values, and design metaphors. These are then compiled into the Design Guideline package (DGP), which serves as an empathy brokerage service for fellow designers. The DGP encompasses four opposing Design Schemata: the Butterfly, the Health Altar, the Dog, and the Bat. Each animal or spiritual object Design Schemata corresponds to a distinct user archetype with unique preferences and characteristics when engaging with health technology. This underscores the challenge of reconciling conflicting people-centered needs in the design process.