Defining Patient and Family Engagement – Threads in the Fabric

I take part in many forums that use the term patient engagement. Most often it means patient compliance with doctors’ orders. I struggle that there aren’t terms for clinician engagement, clinic engagement, hospital engagement, or vendor engagement. The health journey is a series of relationships, partnerships, with shifting foci of ability, skills, priorities. Tools, information, work flows and life flows could help and hinder those relationships.  It’s all on behalf of the person at the center of care, who is sometimes a patient.  I understand that everyone and every team and every organization tends to be self-centered, thinking first of themselves, their own survival. It’s human nature to want someone else to act differently. I know that much of the health industrial complex is really about illness, not health.  It’s usually an illness team not a health team. I also suspect that there’s a similar – minority – proportion of people who drive their own health as there are clinicians and provider organizations that are person centered. Collaboration among people who love each other is fraught, challenging, and continual effort. It gets harder from there. I also know that shared decision-making applies to decisions about treatment AND having persons at the center on Boards of Directors, on design teams, on evaluation teams. How do we then wrestle with the power imbalance of the relationships in the health journey? I don’t think I’m ready for a definition. There’s so much involved. I keep teasing out more threads in the fabric of the health journey.