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

2. 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.

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

4. 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

5. 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

6. 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.

7. 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

8. 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.

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