MS Care Stakeholders
Consistent with a point of emphasis of the Patient Centered Outcomes Research Institute (PCORI), the organization that funded the MS Care study, stakeholder engagement was central to our study's design, conduct, and dissemination. Collaborating with a diverse team of patients, advocates, providers, and administrators increased the relevance of the MS Care intervention and study findings to people affected by MS as well as their providers, communities, and the healthcare system. Their engagement also built a strong foundation for further dissemination and implementation of the intervention and findings to other settings.
We value the contributions made by our stakeholders throughout the study and look forward to continued collaboration as we disseminate the results to the MS community.
Lisa Secan Cara Chamberlin Heather Evans Pam Roque
Elysa Lanz Lisa Bergstrom Jacob Ellul Blake Allison Krehbiel
Elysa had symptoms of MS starting in 1981 but was not diagnosed until in 1989. In addition to 15 years as a patient advisor for the MS Association of King County and UW Medical Center, Elysa has served on several advisory boards, both locally and nationally representing persons with disabilities in the workplace.
Elysa has always had a love of art, and turned to pottery for its therapeutic properties when diagnosed. Her pottery has been her passion and has helped her both physically and mentally while at the same time giving her an outlet for creativity and a way to bring joy into others’ lives.
Elysa Lanz has her Masters in Economics and Education and has worked as an economist in the insurance industry, an adjunct professor of economics and a math teacher.
Lisa has been living with MS herself for over 30 years in addition to family members who have also had MS. Fortunately for her, her MS is fairly mild and relatively stable. Lisa has participated in several MS studies and feels especially honored to be a part of the MS Care stakeholders’ group.
Lisa is from Tombstone, Arizona and graduated from the University of Arizona with a degree in journalism in 1974. She worked in the travel business, marrying her husband in 1983 and moving to Washington. Lisa and her husband raised three boys in Sammamish, and then moved back to Tucson in 1999. After ten years, they are back in the cool Pacific Northwest.
Heather D. Evans is a Ph.D. Candidate in the Department of Sociology at the University of Washington and a Fellow in the Comparative Law & Society Studies Program. She has conducted both statistical analyses and ethnographic fieldwork. Heather’s dissertation examines the paradox of ‘invisible disability’, focusing on the everyday experiences and understandings of the law among people who have acquired non-apparent impairment as adults. Broadly, she is interested in processes of social and institutional marginalization, liminal identities, and perceptions of citizenship.