The patient double bind: Seeking outsiders while creating insiders

Area of Science:

• Healthcare Management
• Patient Engagement
• Organizational Behavior

Background:

• Patient participation is crucial for patient-centered healthcare.
• Patient partners are often tokenized, limiting their impact.
• Understanding patient contribution dynamics in healthcare teams is essential.

Purpose of the Study:

• To explore microprocesses affecting patient contributions in multidisciplinary healthcare change teams.
• To examine how healthcare teams respond to patient contributions.
• To develop theory on patient and staff limitations in achieving patient-centeredness.

Main Methods:

• A 23-month longitudinal inductive study.
• Inclusion of patient partners in multidisciplinary healthcare change teams across three outpatient clinics.
• Data collection through 142 meetings, observations, interviews, and archival data.

Main Results:

• Patients faced recurring marginalization, narrowing, and redefining of their roles.
• Contributions aligning with staff priorities were more readily accepted than those challenging them.
• Three patient pathways emerged: Empowerment to Exit, Empowerment to Acceptance, and Team Reframing to Patient Adaptation.

Conclusions:

• Healthcare teams' well-intentioned interactions can limit patient contributions.
• Achieving patient-centered care requires teams to adapt their mindset and processes.
• Further research is needed to understand and overcome limitations in patient-centered transformation.