PCORI in Practice Webinar Series Patient and Stakeholder Engagement in Research: Making A Difference in PCORI Projects September 19, 2017 1
Introductions Rachel Hemphill, PhD Lisa Stewart, MA Program Officer Engagement Officer Public & Patient Engagement Evaluation & Analysis 2
Today’s Agenda • Introduction to PCORI • Key Findings: The Role of Patient and Stakeholder Partners in PCORI Research Projects • Presentations by PCORI Awardees and Partners Deborah Quint Shelef and Tiara Cuthbertson Annette Crisanti and Gina James • Q&A • Wrap-up 3
Learning Objectives At the conclusion of this webinar, participants will be able to: • Describe the range of ways patients and other stakeholder partners are involved in research across PCORI’s portfolio of funded research projects • Identify examples of how partners impact the research process and the research team 4
Housekeeping Phone lines are muted. You can submit your questions and comments at any time during the webinar via the “question” function on the right side of your screen. If we are unable to address your question during the webinar, please e-mail us at surveys@pcori.org. An archive of this webinar will be posted to https://www.pcori.org/events/2017/patient-and-stakeholder- engagement-research-making-difference-pcori-projects following this event . 5
Introduction to PCORI 6
About Us • An independent research institute authorized by Congress in 2010 and governed by a 21-member Board of Governors representing the entire healthcare community • Funds comparative clinical effectiveness research (CER) that engages patients and other stakeholders throughout the research process • Seeks answers to real-world questions about what works best for patients based on their circumstances and concerns 7
How Is Our Work Different? • We fund research on which care options work, for whom, under which circumstances. • We focus on answering questions most important to patients and those who care for them. • We aim to produce evidence that can be easily applied in real-world settings. • We engage patients, caregivers, clinicians, insurers, employers, and other stakeholders throughout the research process. • This makes it more likely we’ll get the research questions right and the study results will be useful and taken up in practice. 8
PCORI’s Approach to Research “Patient-centeredness” • The project aims to answer questions or examine outcomes that matter to patients within the context of patient preferences • Research questions and outcomes should reflect what is important to patients and caregivers “Patient and stakeholder engagement” • Patients are partners in research, not just “subjects” • Active and meaningful engagement between scientists, patients, and other stakeholders • Community, patient, and caregiver involvement already in existence or a well-thought-out plan 9
PCORI's Approach to Engagement-Our Engagement Rubric 10
Key Findings: The Role of Patient and Stakeholder Partners in PCORI Research Projects 11
Information Sources and Methods Awardee Engagement Ways of Engaging-ENgagement ACtivity Tool Report (WE-ENACT) PCORI Research Awardees Patient & Stakeholder Partners N=260 partners N=305 awardees 12
PCORI projects engage with partners from many communities Communities engaged in PCORI research projects: (by percent of projects) 91% 62% 56% 92% 61% PATIENTS ADVOCACY ORGS CAREGIVERS CLINICIANS HEALTH SYSTEMS 96% of projects engage with at least 1 of these communities PCORI projects also engage with subject matter experts (56%), community-based organizations (36%), policymakers (19%), payers (17%), training institutions (17%), industry (7%), and purchasers (3%) Note: Data from annual awardee reports collected through 6/30/17; N=305 awardees: 70 projects at project year 1, 116 projects at project year 2, 119 13 projects at project year 3.
PCORI projects engage partners in multiple ways Approaches used to engage partners: (by percent of projects) 87% Research Team Members 86% Advisory Groups 50% Co-Investigators 48% Opinion Polls or Interviews Note: Data from annual awardee reports collected through 6/30/17; N=305 awardees: 70 projects at project year 1, 116 projects at project year 2, 119 projects at project year 3. 14
PCORI projects engage partners throughout the research process Research phases engaging partners: (by percent of projects) Research topics and/or research questions 67% Interventions and/or comparators 76% Outcomes and/or measurement 80% Research phases Other aspects of study design 75% Recruitment and/or retention 71% Data collection 50% Data analysis and/or results review 66% Sharing study results 61% Note: Data from annual awardee reports collected through 6/30/17; N=305 awardees: 70 projects at project year 1, 116 projects at project year 2, 119 15 projects at project year 3.
Common engagement activities Share personal perspectives ( e.g., priorities, experiences ) Give guidance and share in decision-making for research project design, processes, and materials (e.g., outcomes studied, recruitment strategies) Active participation in study conduct (e.g., recruiting participants, collecting data, sharing study information or results) Note: Data from annual awardee reports and Partner WE-ENACT collected through 6/30/16. 261 responses from awardees, 260 16 responses from partners.
Engagement makes a difference in PCORI projects Better understanding of stakeholders’ personal perspectives ( e.g., priorities, experiences ) Enhanced patient-centeredness of study process and outcomes • Research questions • Interventions and/or comparators • Outcomes and measures • Data collection • Recruitment/retention strategies • Data analysis and/or results review • Sharing study information or results Enhanced study design, conduct, or efficiency Note: Data from annual awardee reports and Partner WE-ENACT collected through 6/30/16. 261 responses from awardees, 260 17 responses from partners.
Awardees report partner influence across all phases of research Research topics and/or Awardees report partners’ influence on: research questions No influence 2% 19% A small amount 47% A A moderate great amount deal 32% Note: Data from annual awardee reports collected through 6/30/17; N for chart=205 awardees (out of 305 total) who indicated engaging partners in research topics and/or research 18 questions.
Awardees report partner influence across all phases of research Awardees report partners’ influence on: For each phase of research, > 95% of awardees who engaged with partners at that phase report partner influence Note: Data from annual awardee reports collected through 19 6/30/17.
Additional examples of partner influence Awardee report of partners’ influence on: How the team works together 4% 16% 35% 44% Other research projects 22% 24% 29% 24% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% None A small amount A moderate amount A great deal Note: Data from annual awardee reports collected through 6/30/17; N=305 awardees: 70 projects at project year 1, 116 projects at project year 2, 119 20 projects at project year 3.
Engaging in research impacts partners’ personal and professional lives • Established new relationships • Improved personal health management Made a difference in the lives of others • • Personal growth or self-improvement • Gained new knowledge and insights about research • New professional opportunities • Belief in patient/stakeholder representation in research Patients I've been working with have taught me to be a better patient, to self advocate. – Caregiver/Family Member Note: Data from Partner WE-ENACT collected through 6/30/16; 21 N=261.
Panelist Presentations 22
Improving Asthma Outcomes through Stress Management Deborah Quint Shelef, MPH, CCRP, AE-C Tiara Cuthbertson Program Director Parent Partner IMPACT DC IMPACT DC Children’s National Health System Children’s National Health System 23
Improving Pediatric Asthma Outcomes through Stress Management Deborah Quint Shelef IMPACT DC, Center for Translational Science Tiara Cuthbertson Stakeholder, BEAMS Study Member, IMPACT DC Parent Advisory Council
IMPACT DC “Improving Pediatric Asthma Care in the District of Columbia” • Highly collaborative program of care, advocacy, research and education • Focus on urban children with high ED recidivism – The biggest single predictor of an exacerbation of asthma requiring systemic steroids is having had an exacerbation of asthma (Teach et al, 2016) • Conducts patient-centered research, with a specific focus on disparities • Prior to PCORI award, had not specifically engaged parents and stakeholders in our research process.
IMPACT DC Asthma Clinic • Validated intervention proven to improve asthma outcomes • Occurs within 2-4 weeks of hospital visit, leveraging the teachable moment Patient-centered approach: occurs in the ED • • Education, Environmental Management and Clinical Care • Short-term intervention: typically 1-2 visits total
IMPACT DC Asthma Clinic • Provides care to >1300 new patients each year • Fully integrated in continuum of care at Children’s National • Locations in communities with high asthma morbidity
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