The patient double bind: Seeking outsiders while creating insiders

Including patients and their ideas is critical for helping organizations better serve patients. Yet patient partners are often tokenized, which limits the scope and impact of their contributions. In this 23-month longitudinal inductive study of patient participation in multidisciplinary healthcare change teams in three outpatient clinics, we explore the microprocesses that impact patient contributions and the teams’ responses to them. We selected a healthcare organization that was committed to using best practices and evidence-based methodologies when designing, launching, and supporting multidisciplinary teams that included patients and aimed to create more patient-centered clinics. To understand how patients contributed and how their contributions were received by the team, we followed patient-team interactions throughout 142 meetings – supplemented with observations, interviews, and archival data. We observed that, while teams welcomed patients, the patients faced recurring cycles of marginalization, narrowing, and redefining what it means to be a patient member of the team. When patients contributed like staff team members or provided convergent incremental patient perspectives on staff-centered projects, their contributions were more likely to be accepted; whereas when patient contributions diverged–challenged and/or offered alternatives to staff assumptions, priorities, and processes–they faced resistance. We mapped three pathways for patients: 1. Empowerment to Exit, 2. Empowerment to Acceptance, and 3. Team Reframing to Patient Adaptation. By delving into how well-intentioned interactions reshaped patient contributions, we develop new theory to better understand how patients and staff may be limited in their ability/mindset to become more patient-centered.