Patient Advocate Stakeholders July 13, 2015 Johanna Lindsay VP, Public Policy & Advocacy Arthritis Foundation, Great West Region

The Arthritis Foundation We are the Champion of Yes. We exist to conquer arthritis and to help our constituents find their Yes. 1 in 5 American adults have arthritis. We serve those 50+ million adults and 300,000 kids – and their families.

What we do: Help and Support Fundraising & Community Engagement Research & Fellowship Funding Advocacy

Engaging Patients Our patient engagement focus currently lives in our advocacy pillar. Reviewer roles (federal research) Educators (ex.: NIAMS, FDA) Additional role as organizational advocate for patient voices Expertise with consumer needs, barriers Communication channels & expertise

Patient Engagement Value & Limitations Value from Personal Expertise Living with a condition as a patient or family member is crucial expertise Personal value for participating individual for self & community Organizational value Engaging our constituents helps get to the best solution We offer unique knowledge of our population. Value of Reviewer Role Increases potential for investment in our disease categories Also grows the pool of patients engaged in research for the future

Patient Engagement Value & Limitations Limitation from siloing Advocacy arena is our best source vs. research pillar Potential organizational barriers around research May not be such a barrier for soliciting patient partners! Knowledge & Training Need for “cultural” role in research for patients for VHAs as well as research world Communication barriers to patients “Patients are the last to know about new drugs” Lack of information about major research institutions and how to engage.

Opportunities/Challenges Conflicting roles Varied infrastructures for VHA groups Shift from “enrolling” to “engaging” Lack of user-friendly opportunities for pts to learn about research Lack of communication models for partners Mutual fears of research & patient partners

Guiding Thoughts “Not just a patient.” Engage stakeholders early Be open and honest VHAs can be slow. Think about VHA roles as well as patient partners, esp. in dissemination.

“We are not only helping ourselves, but everyone who might be diagnosed with arthritis at some point in their lives.” - Meaghan Victory