Improving Multiple Sclerosis Care: Listening to the Voice of the Patients

Background:   The importance of patient, family, and caregiver experiences in quality care is increasingly recognized.  Partnering with patients, families, and caregivers through advisory councils provides valuable insight into the unique experiences of these groups and improves the efficiency of process improvement projects. 

Objectives:   Review the impact of incorporating a patient advisory council into process improvement at a large multiple sclerosis center

Methods:   Voice of the Patient Advisory Council (VPAC) meetings were held quarterly from 2014-2016.  Discussion topics were chosen by a committee representing all areas of clinical operations including scheduling, secretarial support, psychology, social work, neurologists, nursing, and department administration.

Results: The VPAC shared their perceptions of many aspects of communication: optimizing electronic MyChart usage, reducing phone calls, scheduling of appointments and procedures, reaching the appropriate care team member, navigating to and within the website, participating in research, improving the safety of the MS center, and educating patients and caregivers about Multiple Sclerosis. These sessions led to many projects which should improve the overall patient experience: development of a quick reference card for efficient communication, updates to the patient information binder, selection of topics for online education, revival of a center newsletter to communicate center and MS community updates, dissemination of wellness tips, promotion of research, and inclusion of the patient perspective in the annual continuing education courses for health professionals. 

Conclusions: Collaboration with patients, families, and caregivers can improve the quality of care they receive.  Their observations and perceptions can help target process improvement initiatives