1. Innovations in Partnered Care James O’Leary, MBA Genetic Alliance

2. What is the definition of care?

3. Complex Needs

4. What is meaningful engagement?

5. Addressing Gaps in the System Support Coordination Empowerment Clinical Health Outcomes Mental Health and Wellness QualityAccess

6. Navigating Systems and Accessing Services Partners in care Strengths-based patient navigation intervention for individuals with complex conditions. Purpose: Identify and target barriers to care Provide coaching to surpass these barriers Maintain a social and emotional support relationship with individuals and families, furthering health literacy and self-efficacy Conduct outreach, mobilizing local and national resources

7. Support Activities Meet before and after appointments, discuss goals, questions, and concerns Provide or refer to ongoing social and emotional services Advocate on behalf of family in institutional, educational, and community settings Evidence Interviews at sites with clinical programs in navigation Interviews with coordinators and participants of peer matching programs Peer-reviewed discussions of outcomes from site-specific demonstration programs Strength of Evidence: Data from specific models show improved psychosocial outcomes

8. Coordination Activities Convene care team at intake, schedule regular interdisciplinary meetings Use technology to integrate records and communicate among multiple providers Identify and mobilize community resources Evidence Interviews at sites with clinical programs in navigation Interviews with coordinators and participants of peer matching programs Peer-reviewed discussions of outcomes from multi-site demonstration programs Strength of Evidence: Data from specific models and multi-site projects show significantly decreased health utilization costs; longitudinal evidence needed

9. Empowerment Activities Coach on communications skills, condition, institutional and community resources Foster family engagement in clinical and outside settings Evidence Interviews at sites with clinical programs in navigation Interviews with coordinators and participants of peer matching programs Peer-reviewed discussions of outcomes from site-specific demonstration programs Strength of Evidence: Data from specific models show Improved self-efficacy, quality of life, and emotional well-being

10. Research gaps Clinical health and wellness outcomes across all patient-engagement models – Identify and measure clinical outcomes for multiple settings/models/conditions – Identify and measure wellness outcomes (quality of life, self-efficacy, etc.) – Measure impact on appropriate referral and follow-up – Measure attainment of services/access stratified against individuals facing different types of barriers – Measure time to follow-up/length of diagnostic odyssey

11. Research gaps Appropriate referral to support – Measure impact on clinical outcomes across support types – Measure impact on wellness outcomes across support types – Categorize appropriate support services based upon condition

12. Research gaps Online approaches to engagement – Conduct user analysis including self-efficacy measures – Assess appropriateness of health IT solutions for patient navigation/referral to support – Conduct institutional assessments on ability to use data nimbly to be responsive to patient needs

13. Contact James C. O'Leary, MBA Chief Innovation Officer (202) 966-5557 x206 joleary@geneticalliance.org www.geneticalliance.org