Welcome and Introductions Advisory Panel on Patient Advisory Panel on Addressing Engagement Disparities Charlotte W. Collins, JD Co-Chair Doriane Miller, MD Co-Chair Darius Tandon, PhD Co-Chair Grant Jones Co-Chair Patient Engagement Advisory Panel, April 28, 2014 21
Advisory Panel on Patient Engagement Charlotte Collins Stephen Arcona Paul Arthur Steven Blum Marc Boutin Kristin Carman Perry Cohen Amy Gibson Regina Greer-Smith Bruce Hanson Lorraine Johnson Julie Moretz Melanie Nix Sally Okun Laurel Pracht Lygeia Ricciardi Darius Tandon Sara van Geertruyden Saul Weingart Leana Wen Patient Engagement Advisory Panel, April 28, 2014 22
Advisory Panel on Addressing Disparities Alfie Breland-Noble Tammy Burns Monique Carter Alyna Chien Echezona Ezeanolue Kevin Fiscella Martina Gallagher Venus Gines Martin Gould Jacqueline Grant Chien-Chi Huang Elizabeth Jacobs Grant Jones Patrick Kitzman Doriane Miller Alan Morse Carmen Reyes Russell Rothman Mary Ann Sander Deborah Stewart Patient Engagement Advisory Panel, April 28, 2014 23
Update on the PCORI Ambassador Program * Informational * Aingyea Kellom, MPA Program Associate, Patient Engagement Patient Engagement Advisory Panel, April 28, 2014 24
Objectives for Update To provide an update on program status To share the planned agenda and meeting objective for annual meeting To share implementation of evaluation plan and the opening of the program to the public Patient Engagement Advisory Panel, April 28, 2014 25
Program Status 67 individual and 14 organizational ambassadors Geographic region: 7 West, 12 Midwest, 26 Northeast, 25 Southeast, and 11 Southwest Training: 24 completed First quarterly newsletter distributed Patient Engagement Advisory Panel, April 28, 2014 26
Annual Meeting Theme: “Building a National Community for PCOR” June 2014 Minneapolis, MN Key components: ambassador presentations, social media training, Pipeline to Proposals opportunity, panel on consumer health and health care research First planning committee call held April 21 st Patient Engagement Advisory Panel, April 28, 2014 27
Evaluation Plan and Public Invitation First six month program evaluation will be released in August 2014 Engagement Priorities Measured: Develop Community, Engagement Community in Research, and the Dissemination and Implementation of Research Findings Targeted interviews with Ambassadors and PCORI staff Evaluation Tools: Web Intake Form, Program Surveys, Training Course Survey, Yammer Analytics, and Twitter Tracking Public initiation pending review of first annual evaluation Patient Engagement Advisory Panel, April 28, 2014 28
Q&A Patient Engagement Advisory Panel, April 28, 2014 29
Addressing Disparities Program Portfolio * Discussion Item * Romana Hasnain-Wynia, PhD Program Director, Addressing Disparities Patient Engagement Advisory Panel, April 28, 2014 30
Agenda Addressing Disparities Program Background Program mission and goals Program progress to date Conceptual Framework & Driver Model Addressing Disparities program portfolio Disparities projects across all PCORI programs Next Steps Discussion Patient Engagement Advisory Panel, April 28, 2014 31 31
Addressing Disparities Program Staff Romana Hasnain-Wynia, MS, PhD Cathy Gurgol, MS Ayodola Anise, MHS Program Director Program Officer Program Officer Tomica Singleton Katie Lewis, MPH Mychal Weinert Senior Administrative Assistant Program Associate Program Associate Patient Engagement Advisory Panel, April 28, 2014 32
Addressing Health Disparities Advisory Panel Addressing Health Disparities Advisory Panel 33
Addressing Disparities Mission Statement PCORI’s Vision, Mission, Strategic Plan Program’s Mission Statement To reduce disparities in healthcare outcomes and advance equity in health and health care Program’s Guiding Principle To support comparative effectiveness research that will identify best options for eliminating disparities. Patient Engagement Advisory Panel, April 28, 2014 34
Addressing Disparities: Program Goals Identify • Identify high-priority research questions Research relevant to reducing and eliminating long- standing disparities in health care outcomes Questions • Fund comparative effectiveness research Fund Research with the highest potential to reduce and eliminate health care disparities Disseminate • Disseminate and facilitate the adoption of Promising/Best promising/best practices to reduce and eliminate health care disparities Practices Patient Engagement Advisory Panel, April 28, 2014 35
Progress toward Goal (2012—15) Broad PFAs • 31 projects totaling $52.8M 4 cycles Targeted PFAs • Treatment Options for Uncontrolled Asthma: 8 projects totaling $23.2M 1 cycle • Obesity treatment options in primary care, awards in August 2014 Pipeline for • Pragmatic clinical trials, awards in January 2015 Targeted PFAs • In Development Stage ( Hypertension ,Perinatal, Lower Limb Amputations) Patient Engagement Advisory Panel, April 28, 2014 36
Targeted Funding Announcement: Treatment Options for African Americans and Hispanics/Latinos with Uncontrolled Asthma 8 Awards, $24 million Projects focus on Comparing interventions to improve clinician and patient adherence to NHLBI guidelines by • Enhancing provider and patient communication (e.g., use of mobile technology); • Improving systems of care (e.g., evaluate models that look at data integration); and/or • Improving integration of care (e.g., team-based care). Include patient-centered outcomes Strong stakeholder engagement Patient Engagement Advisory Panel, April 28, 2014 37
Addressing Disparities Portfolio Snapshot Research Areas Care systems Infectious 5% Disabilities Sexual/repro disease 2% 5% 5% Injury/trauma Cancer 2% Neurologic 8% 3% Chronic Conditions Portfolio Alcohol/drug Multiple 3% Chronic conditions, pain, 2 Psychiatric 4 18% Diabetes, 1 Chronic CVD, 2 COPD, 1 conditions Respiratory 36% illness, 1 Asthma, 8 AD Portfolio Patient Engagement Advisory Panel, April 28, 2014 38
Addressing Disparities Portfolio Snapshot Disparities Population (not mutually exclusive) 35 31 30 25 25 20 # of Projects 15 8 8 10 5 2 2 0 Patient Engagement Advisory Panel, April 28, 2014 39
Addressing Disparities Portfolio Snapshot Research Methods: Study Design 33 35 30 25 20 # of 15 Projects Quasi- 10 experimental 6 5 Observational 0 RCT Non-RCT Study Design Patient Engagement Advisory Panel, April 28, 2014 40
Long-Term Outcomes of Community Engagement to Address Depression Outcomes Disparities Engagement • Community agencies collaborate to tailor depression toolkits to the Looks at long-term patient needs and strengths of outcomes of community community engagement intervention vs. a Potential Impact technical assistance model, identifies patient preferences and • Could change practice by priorities for outcomes, and providing information about how assesses community capacity to depressed patients prioritize outcomes and make decisions, respond to these priorities. and could affect practice by Kenneth Wells, MD, MPH, showing how clinicians respond University of California, Los Angeles to patients’ preferences Los Angeles, CA Methods Addressing Disparities Research Project, • Mixed methods approach and a awarded December 2012 randomized controlled trial 41
Mrs. A and Mr. B (People with Disabilities, Primary Care Provider Quality, and Disparities) Engagement • Patient participation informs the Investigates why it is more design and specific aims of the difficult for people with study, and qualitative data disabilities to get care, with the main collection from families and clinicians examines access to care goal of developing the Patient- from additional perspectives Inspired Surveillance Tool to provide guidance on addressing disparities Potential Impact in care. • Could change practice by providing information to patients with disabilities on how they can best access care and stay healthier Margaret Stineman, MD, University of Pennsylvania Methods Philadelphia, PA • Secondary data analysis Addressing Disparities Research Project, complemented by mixed methods awarded May 2013 Patient Engagement Advisory Panel, April 28, 2014 42
Conceptual Framework & Driver Model 43
Conceptual Framework: Designing and Evaluating Interventions to Eliminate Disparities in Health Care Cooper et al. Journal of General Internal Medicine Volume 17, Issue 6, pages 477-486, 24 JUL 2002 DOI: 10.1046/j.1525-1497.2002.10633.x http://onlinelibrary.wiley.com/doi/10.1046/j.1525-1497.2002.10633.x/full#f1 44
Addressing Disparities Driver Model Tertiary Drivers Secondary Drivers Primary Drivers Program Mission Self- Management Access to Care Community Policy Health Workers Training/ Education Cultural/ Language Tailoring Reduce/ Eliminate Workforce Decision Disparities in Support Organizational Health Care Outcomes Family/ Patient Caregiver Involvement Empowerment Team-Based Point of Care/ Care Technology Communication Social Support Community/ Home Developmental Environment 45
Addressing Disparities Driver Model The model is an evolving tool used to Evaluate where we are Identify where we need to go Patient Engagement Advisory Panel, April 28, 2014 46
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