Why work with patients and families to transform care?

Engaging patients and families as partners in research and quality improvement can help accelerate better care experiences and better population health — at lower costs. When we recognize patients’ expertise and listen to their stories with empathy, we gain understanding about the root causes of problems and insights into how to solve them.

At the root of patient and family engagement are the relationships we foster. Stories that we tell and connections we make to one another help us ensure that trust and confidence, personalized care, and ensuring understanding become an integral part of our work.   

The challenge

Actively elicit patients and family member perspectives and experiences to design and tailor better solutions to improve care.

The work

Patient and family engagement occurs on a continuum from consultation and involvement to partnership and shared leadership. In the ACT Center, we engage patients in a variety of ways, including:

• Surveys, interviews and focus groups with patient and family stakeholders
• Co-design with patient partners who join project teams to co-create interventions and project materials
• Collaboration with patient advisory groups who provide invaluable feedback on project priorities and activities

Impact

We are learning from our patient partners across a variety of projects. Below is a sample of their contributions to our projects.

• On the Integrated Pain Management project, patient partners led the design of patient education materials and a self-management toolkit, provided consultation and feedback on resources for Kaiser Permanente Washington care teams, offered insights on project activities, and influenced the study design by sharing details of the patient experience of care. The patient partners stay up to date with weekly emails from the team and meet monthly.
   
• As part of the Adolescent Integrated Mental Health project, teens and parents participated in interviews about the ideal workflow for teens to access integrated mental health services. These interviews shaped the project design and surfaced the importance of confidentiality and transparency.
   
• The Social Health Integration project developed a patient panel to guide all phases of design, implementation, and evaluation. The panel meets monthly to review data, respond to care team questions, and reflect on the research team's proposed plans.

Featured work in patient and family engagement

---

Featured publications

Stefanik-Guizlo K, Allen C, Brush S, Mogk J, Canada S, Peck M, Ramos K, Volpe K, Lozano P. Sustaining connections: feasibility and impact of long-term virtual patient engagement. Res Involv Engagem. 10, 28 (Feb 2024). doi.org/10.1186/s40900-024-00558-2. Full text

Hertel E, Cheadle A, Matthys J, Coleman K, Gray M, Robbins M, Tufte J, Hsu C. Engaging patients in primary care design: An evaluation of a novel approach to codesigning care. Health Expect. 2019 May 27. doi: 10.1111/hex.12909 [Epub ahead of print] Full text

---