©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

©PPRNet 2014 GOALS Update members on recently submitted PCORI application Engage participants in planning PPRNet’s approach to patient-centered and patient engaged research in implementation of cholesterol guidelines

©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

©PPRNet 2014

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?”

©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?”

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

©PPRNet 2014 PCORI: ASSESSMENT OF PREVENTION, DIAGNOSIS AND TREATMENT OPTIONS Comparative effectiveness research to: –Inform critical decisions that face patients and caregivers, clinicians, policy makers, and health care system leaders –Decisions occurring now in the absence of sound evidence about the comparative effectiveness of alternative approaches –Substantial potential that patients/caregivers will benefit from the new knowledge in ways that are important to them

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

©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

©PPRNet 2014 WHAT WE KNOW Statin Benefit Groups (SBGs) Statin Dose Recommendation 1 Patients with clinical ASCVD 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 years with LDL-C mg/dL, estimated 10-year ASCVD risk less than 7.5% Moderate-intensity Patients with diabetes, age years with LDL-C 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*

©PPRNet 2014 ASCVD Risk Reduction Practice-Level Report

©PPRNet 2014 ASCVD Risk Reduction PLR

©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

©PPRNet 2014 A NEW APPROACH TO PPRNET PROJECTS –Patient and stakeholder engagement Input on project design Identifying outcomes of interest Monitoring project progress Dissemination of results

©PPRNet 2014 CLINICIAN ENGAGEMENT Expressed interest across PPRNet activities Initial survey responses (39 in 10 days!) helped define research question Further input gathered during webinars and calls on what, how of intervention Invited patients to participate in survey

©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”

©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.”

©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

©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

©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

©PPRNet 2014 PROJECT ACTIVITIES Patient surveys on patient-reported outcomes Focus groups among high performing practices “Patient Partners” to advise research team throughout project

©PPRNet 2014 CHANCES ARE… We will not be funded We need your input on how to position our next wager!

©PPRNet 2014 Recognizing the controversy of the new guidelines and their upcoming anniversary, is this – engaging patients in implementation of new cholesterol guidelines – the “right” topic for a PPRNet PCORI study? –Why? –Why not? ENGAGING CLINICIAN STAKEHOLDERS

©PPRNet 2014 This will be a “Communication and Dissemination Research” proposal. What “gaps” have you experienced in communicating new guideline recommendations to patients and their caregivers? ENGAGING CLINICIAN STAKEHOLDERS

©PPRNet 2014 What tools or strategies would help (or have helped) your practice engage patients in the implementation of the new guidelines? ENGAGING CLINICIAN STAKEHOLDERS

©PPRNet 2014 What PPRNet interventions would help your practice improve implementation of the new guideline? ENGAGING CLINICIAN STAKEHOLDERS

©PPRNet 2014 WHAT NEXT? September 2014Funding decisions October 2014Gather additional patient input Update practice letters of support November 2014 Resubmission

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