Where Did PACES Come From?
The Program of Active Consumer Engagement in Self-Management (PACES) in Epilepsy was established at the University of Washington Health Promotion Research Center in 2008 through a grant from the Centers for Disease Control and Prevention (CDC) Epilepsy Program.
Starting With Curiosity
Prior to developing the content and structure of a patient program, Drs. Fraser and Johnson felt it was important to ask patients what they saw as their problems, what kind of help they wanted, and how they wanted to receive help. This research project supplied the evidence base for the PACES in Epilepsy content and design.
Testing It Out
Subsequently, multiple randomized controlled trials were conducted at the University of Washington, to find out if PACES was effective at improving psychosocial well-being and epilepsy self-management. The program was tested across multiple waves of participants:
- Adults age 18+ with epilepsy who mostly lived in King County and came in-person to the UW Regional Epilepsy Center in Seattle, WA.
- Adults age 18+ with epilepsy who lived in rural areas of Washington, Oregon, Montana, and Wyoming and attended groups by telephone.
- Adults age 18+ with epilepsy who lived throughout the Pacific Northwest and attended groups by telephone.
Distribution and Implementation
In recent years, we have partnered with the Epilepsy Foundation and epilepsy medical clinics/centers to train personnel (providers and peers) to deliver PACES in the same manner it was offered in the research studies.
To date, PACES has been implemented in Washington, Oregon, Alaska, Montana, Michigan and Texas.