Despite growing recognition of the importance of community-based palliative care, optimizing the use of services continues to be a challenge. Until recently, key barriers were reimbursement and limited access. As services have become increasingly available, engagement of patients and their caregivers has emerged as a major obstacle. The Palliative Activation SystemTM (PAS) is a comprehensive, quality improvement methodology designed to promote enhanced engagement of seriously ill adults and their caregivers in optimizing the use of community-based palliative care services and accelerate clinicians' progress in meeting patients' and caregivers' care goals. This paper describes the design of the PAS. Experts in patient engagement and the development and evaluation of palliative care programs advised organizational leaders in the development of this methodology. The "Patient and Family Engagement" framework proposed by Carman and colleagues (2013) guided this work. The framework informed the selection of three core concepts-care alignment, illness trajectory, and social determinants of health-as foundational to the goals of the PAS. Additionally, this framework guided the selection of measures that will be used to assess progress in achieving enhanced engagement. This background work, coupled with findings from interviews with patients and caregivers who are current recipients of palliative care services, resulted in the implementation and ongoing testing of strategies targeting clinicians and organizational leaders and designed to enhance engagement. Lessons learned from the design phase of the PAS will advance the efforts of other organizations committed to increasing patient and caregiver engagement and enhancing attainment of their goals.
Keywords: family caregiver engagement; home-based palliative care; patient engagement; quality improvement; value-based care.