1. ©PPRNet 2014 Impact of Patient Engagement on Treatment Decisions and Patient-Centered Outcomes in the Implementation of New Guidelines for the Treatment of Blood Cholesterol

2. ©PPRNet 2014 GOALS Update members on recently submitted PCORI application Highlight PPRNet’s planned approach to patient-centered and patient engaged research in implementation of cholesterol guidelines

3. ©PPRNet 2014 PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE Independent, non-profit organization authorized under Affordable Care Act “Fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions” Funded >$200 million in research in 2013

4. ©PPRNet 2014

6. PCORI PRIORITIES Research will help answer these questions: “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?” “What are my options and what are the potential benefits and harms of those options?”

7. ©PPRNet 2014 PCORI PRIORITIES Research will help answer these questions: “What can I do to improve the outcomes that are most important to me?” “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and healthcare?”

8. ©PPRNet 2014 PPRNET RESEARCH AND THE PCORI VISION New approach to projects –Patient and stakeholder engagement Input on project design Identifying outcomes of interest Monitoring project progress Dissemination of results

9. ©PPRNet 2014 WHAT WE KNOW Cardiovascular disease remains a relevant problem Cholesterol is a key modifiable risk factor for atherosclerotic cardiovascular disease (ASCVD)

10. ©PPRNet 2014 WHAT WE KNOW American College of Cardiology/American Heart Association published revised guideline on the Treatment of Blood Cholesterol (TBC) in late 2013 –Major shift in focus –Emphasis on patient- centered approach –Clinical controversies

11. ©PPRNet 2014 WHAT WE KNOW Statin Benefit Groups (SBGs) Statin Dose Recommendation 1 Patients with clinical ASCVD 21-75 years of ageHigh-intensity Patients with clinical ASCVD over 75 years of ageModerate-intensity 2 Patients with primary elevations of LDL-C (greater than or equal to 190 mg/dL) High-intensity 3 Patients with diabetes, age 40-75 years with LDL-C 70-189 mg/dL, estimated 10-year ASCVD risk less than 7.5% Moderate-intensity Patients with diabetes, age 40-75 years with LDL-C 70-189 mg/dL, estimated 10-year ASCVD risk greater than or equal to 7.5% High-intensity 4 Patients with estimated 10-year ASCVD risk of at least 7.5% Patient-centered discussion prior to initiating moderate-to- high intensity*

12. ©PPRNet 2014 ASCVD Risk Reduction Practice-Level Report

13. ©PPRNet 2014 ASCVD Risk Reduction PLR

14. ©PPRNet 2014 WHAT WE DON’T KNOW How to implement a patient-centered approach to discussion of treatment options in “real world” practice What types of practice-based interventions promote patient-centered decision making

15. ©PPRNet 2014 AIMS OF THE PROPOSED PROJECT 1.Compare the impact of a patient-engaged, practice-based intervention to promote patient-centered care (PE-TRIP) to Usual PPRNet Implementation on concordance with the TBC guideline and patient- reported outcomes among 30 PPRNet practices

16. ©PPRNet 2014 AIMS OF THE PROPOSED PROJECT 2. Synthesize “lessons learned” during TBC guideline implementation to identify a set of strategies that promote concordance with the TBC guideline and patient-centered discussions of treatment options in primary care practice

17. ©PPRNet 2014 PROJECT ACTIVITIES All practices: “typical” guideline implementation –Introductory webinar on TBC guideline –Quarterly reports “Patient-engaged” intervention practices +Site visits +“Best practice” meeting + webinars

18. ©PPRNet 2014 PROJECT ACTIVITIES Patient surveys on patient- reported outcomes Focus groups among high performing practices

19. ©PPRNet 2014 ENGAGING CLINICIAN STAKEHOLDERS PlanningDissemination Expressed interest Initial survey responses (39 in 10 days!) helped define research question Further input during webinars and calls Invited patients to participate in survey Review study findings and provide input during final webinar

20. ©PPRNet 2014 ENGAGING PATIENTS PlanningDissemination Survey responses from 57 patients in 10 states on hypothetical scenarios Two patients volunteered to serve as “Research Team Patient Partners” Patient Advisors review study findings with practice team at final webinar Advisors and Partners invited to present at professional meetings

21. ©PPRNet 2014 PATIENT INPUT What matters most to you? “I trust the advice of my doctor” “What it is in my situation that leads the doctor to make such a recommendation” What should your doctor’s role be in helping you make these decisions? “Provide information I can use to self-educate” “I generally ask what the doctor would do in my situation”

22. ©PPRNet 2014 PATIENT INPUT “I lost my father to a massive coronary event at the age of 63 and my sister had a heart attack at 50. I had high cholesterol and with diet and medicine that is now under control. I think the key lies in within our power to prevent.” “Being a patient with diabetes that also receives treatment for high cholesterol this is something very near and dear to my heart.”

23. ©PPRNet 2014 WHAT NEXT? September 2014Funding decisions October 2014Gather additional stakeholder input November 2014 Resubmission prn December 2014Start project if funded!

24. ©PPRNet 2014 WHAT IS REQUIRED OF PRACTICES? Open to all members! Routine PPRNet data extracts Introductory site visit Direct patients to online survey If randomized to intervention, invite patients to participate, send representatives to network meeting and host 4 site visits If invited, send representatives to “best practice” focus group

25. ©PPRNet 2014 INCENTIVES TO PARTICIPATE Opportunity to inform real-world patient- centered implementation of guidelines Facilitated PPRNet quality and safety improvement assistance Concrete example for PCMH “Patient Advisory Council” objective Financial incentives for practices ($250/provider/year) and patient advisors ($25/activity)

26. ©PPRNet 2014 Input on resubmission –Controversial – interest in this? –More input from patients? How?

27. ©PPRNet 2014 WHAT DOES THIS MEAN FOR YOU? We may need your help! –Agree to participate (if funded) –Reach out to patients –Update letters of support

28. ©PPRNet 2014 SUMMARY We are committed to developing “meaningful” PCORI applications and look forward to your input! (See next presentation…)