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Latino RoundtableDiscussionJuly 23, 20139:00 AM – 3:00 PM1828 L Street NW Suite 900 Washington, DC 200361

Housekeeping! Webinar participants can provide input via the webinar“chat” feature or via e-mail(latinoroundtable@pcori.org).! Submitted questions will be discussed during the publiccomment periods at 11:45 AM (ET) and 2:15 PM (ET).! Additional input and comments are welcome throughFriday, July 26, at 5 PM (ET) via e-mail atlatinoroundtable@pcori.org.2

Welcome and Overview ofPCORIAnne C. Beal, MD, MPHDeputy Executive Director and Chief Officer for EngagementLatino RoundtableJuly 23, 20133

About Us! An independent non-profit research organizationauthorized by Congress as part of the 2010 PatientProtection and Affordable Care Act (PPACA).! Committed to continuously seeking input frompatients and a broad range of stakeholders toguide its work.4

Our Mission and VisionMissionThe Patient-Centered Outcomes Research Institute (PCORI)helps people make informed healthcare decisions andimproves healthcare delivery and outcomes, by producing andpromoting high-integrity, evidence-based information thatcomes from research guided by patients, caregivers, and thebroader healthcare community.VisionPatients and the public have the information they need tomake decisions that reflect their desired health outcomes.5

PCORI’s Board of Governors Representsthe Entire Healthcare CommunityPCORI Board of Governors, March 2012, in Baltimore, MD6

Our Purpose, from the PPACA“The purpose of the Institute is to assistpatients, clinicians, purchasers, and policymakers in making informed healthdecisions by advancing the quality andrelevance of evidence concerning the mannerin which diseases, disorders, and otherPurpose health conditions can effectively andappropriately be prevented, diagnosed,oftreated, monitored, and managed throughPCORI research and evidence synthesis thatconsiders variations in patient subpopulationsand the dissemination of research findingswith respect to the relative health outcomes,clinical effectiveness, and appropriateness ofmedical treatments, services.Source: Affordable Care Act. Subtitle D, PUBLIC LAW 111–148—MAR. 23, 2010.7

Our Core Duties!!!!Establish national research prioritiesEstablish and carry out a research agendaDevelop and update methodological standardsDisseminate research findings8

National Priorities for Research andResearch AgendaAssessment of Prevention, Diagnosis, and Treatment Options Comparisons of alternative clinical options to support personalized decision making and self-care Identifying patient differences in response to therapy Studies of patient preferences for various outcomesImproving Healthcare Systems Improving support of patient self-management Focusing on coordination of care for complex conditions and improving access to care Comparing alternative strategies for workforce deploymentCommunication and Dissemination Research Understanding and enhancing shared decision making Alternative strategies for dissemination of evidence Exploring opportunities to improve patient health literacyAddressing Disparities Understanding differences in effectiveness across groups Understanding differences in preferences across groups Reducing disparities through use of findings from patient-centered outcomes research (PCOR)Accelerating PCOR and Methodological Research Improving study designs and analytic methods of PCOR Building and improving clinical data networks Methods for training researchers and patients to participate in PCOR Establishing methodology for the study of rare diseases9

Criteria for Research, from the PPACAImpact on Healthof Individuals andPopulationsAddressesCurrent Gaps inKnowledge/Variation in CarePatientCenterednessImprovabilitythrough ResearchImpact dsInclusiveness ofDifferentPopulationsPotential toInfluenceDecision MakingEfficient Use ofResearchResources10

What Makes PCORI Funding Different?! User-friendly announcements to encouragebroader range of applicants! Patient and stakeholder engagement plan! Dissemination and implementation assessment! Reproducible and transparent research plan! PCORI criteria outlined by statute! Rigorous methodology standards11

PCORI Does Not Fund Research That .! Studies cost-effectiveness! Studies causes of disease! Does not measure patient-centered outcomes! Does not compare approaches to improvingpatient-centered outcomes! Studies questions that have already beenanswered or are in the process of being answered12

PCORI’s Two Paths to Funding Research13

PFA Cycle I and II AwardsCycle I Awards25 projects in 17 states 40.7 million (over 3 years)Cycle II Awards51 projects in 20 states 88.6 million (over 3 years)14

Funded ProjectsPilot ProjectsAddressing Mental Health Needs of Rural African AmericansAssessment of Prevention, Diagnosis, and Treatment OptionsCycle II: Generating Critical Patient-Centered Information for Decision Making in Localized Prostate CancerCycle II: Treatment Preference and Patient-Centered Prostate CancerImproving Healthcare SystemsCycle II: Improving Healthcare Systems for Access to Care and Efficiency by Underserved PatientsCommunication and Dissemination ResearchCycle I: Extension Connection: Advancing Dementia Care for Rural and Hispanic PopulationsAddressing DisparitiesCycle I: Long-Term Outcomes of Community Engagement to Address Depression Outcomes DisparitiesCycle II: Padres Efectivos (Parent Activation): Skills Latina Mothers Use to Get Healthcare for Their Children15

PCORI’s First Targeted Research Topics!!!!Identified several high-priority,stakeholder-vetted topics for targetedPFAsJumpstart PCORI’s long-term topicgeneration and research prioritizationeffortLeverage stakeholder input frombefore PCORI’s existenceAllow us to build on our engagementworkResearch Topic:Treatment of severe asthma in AfricanAmericans and Hispanics/LatinosLetter of Intent Due: 8/1/13Maximum Budget: Year 1, up to 500,000total cost; Year 2, up to 1.75 million totalcost; Year 3, up to 1.75 million total costMaximum Project Period: 3 years16

PCORI’s Two Paths to Funding Research17

Introductions18

Patient-Centered Outcomes ResearchOpportunities9:45 AM – 10:30 AM19

Addressing DisparitiesProgramAdaeze Akamigbo, PhD, MPPSenior Program Officer, Addressing DisparitiesJuly 23, 201320

Addressing Disparities Program StaffRomanaHasnain- ramAssociate

Addressing Disparities: Mission StatementPCORI’sVision, Mission, Strategic PlanProgram’s Mission StatementTo reduce disparities in healthcare outcomes and advanceequity in health and health careProgram’s Guiding PrinciplePCORI is not interested in studies that describe disparities;instead, we want studies that will identify best options foreliminating disparities.22

Addressing Disparities: Program GoalsIdentifyResearchQuestions Identify high-priority researchquestions relevant to reducing longstanding gaps in disparate populationsFund Research Fund research with the highestpotential to address healthcaredisparitiesDisseminateBest Practices Disseminate and facilitate the adoptionof research and best practices toreduce healthcare disparities23

Advisory Panel Prioritized TopicsRankShort NameTopicHealth communicationassociated with competingtreatmentsCompare the effectiveness of clinician/patient healthcommunication models on improving outcomes in minoritypopulations, patients with low literacy and numeracy, peoplewith limited English proficiency, underserved populations, andpeople with disabilities.Heart attacks among racialand ethnic minoritiesCompare the effectiveness of health interventions (includingplace-based interventions in community health centers) toenhance the “Million Hearts” program and reduce majorvascular events among the economically disadvantaged,including racial and ethnic minorities and rural populations.3Hypertension in minoritiesCompare the effectiveness of different delivery models (e.g.,home blood pressure monitors, utilization of pharmacists orother allied health providers) for controlling hypertension inracial minorities.4Interventions for improvingperinatal outcomesCompare the effectiveness of multi-level interventions (e.g.,community-based, health education, usual care) on reducingdisparities in perinatal outcomes.5Reduce lower extremityamputations in minoritiesCompare the effectiveness of interventions on reducingdisparities in lower extremity amputations in racial and ethnicminorities.1224

Addressing DisparitiesFund researchthat will havean Identify best/promisingpractices forresearch andimplementationIdentify researchoutcomes thattranslate toimproved healthoutcomesShort-TermTell acomprehensivestory about oureffort and impactInterimIdentify ermProgram GoalsPCORI ceresearchOngoing Internal and External Programmatic Evaluation25

Addressing Disparities: Projects to Date 14 studies and growing just for broad announcements Range of projects will grow and change over the next yearBy RegionBy AgeNortheast21%West36%Adults79%Children 14%By Health pecific7%Injury7%26Older adults7%

Addressing Disparities:Broad Funding Announcements! 14 studies funded under the Addressing Disparitiesprogram§ Long-term outcomes of community engagement to addressdepression outcomes disparities, UCLA, Los Angeles, CA§ Comparative risks and benefits of gender reassignment therapies,Emory, Atlanta, GA! 14 other studies address disparities issues in otherprogram areas§ Patient-centered trauma treatment for PTSD and substance abuse:Is it an effective treatment option? University of New Mexico, NM§ Extension Connection: Advancing dementia care for rural andHispanic populations, University of Iowa, Iowa City, IA27

Addressing Disparities:Targeted Funding Announcements28

Group Photo and Break10:30 AM – 11:00 AM29

Health and Healthcare Issues in theLatino Community11:00 AM- 11:45 AMPublic Comment at 11:45 AM30

LUNCH12 Noon - 12:30 PM31

Health and Healthcare Issues in theLatino Community(continued)12:30 PM – 1:00 PM32

Immediate EngagementOpportunities at PCORISusan Sheridan, MBA, MIMDirector, Patient EngagementLatino Roundtable33

Patient and Stakeholder Engagementin Patient-Centered Outcomes ResearchReview Proposals andPartner in ResearchAdvise Us as to What PCORIShould Study:What questions are most important?(research prioritization)What outcomes should be studied?(topic generation)Review research proposals for impactand patient-centerednessParticipate in conducting researchPatientsandStakeholdersHelp Us Share the FindingsTell Us How We Are DoingHow do we best communicateimportant research findings?How can we improve on what we are doingand how we are doing it?34

Engagement Workshops andRegional EventsWorkshops!Transforming Patient-Centered Research: Building Partnerships and Promising Models§ § !Helped to bring together consumers, patients, caregivers, advocacy groups, researchers, and other stakeholdersin an effort to start building a patient-centered research communityHeld October 27–28, 2013, in Washington, DCWhat Should PCORI Study? A Call for Topics fromPatients and Stakeholders§ § Helped to bring together the broad range of healthcare stakeholdersto share and discuss important future topics of patient-centeredoutcomes researchHeld December 4, 2012, in Alexandria, VARegional Events!The Power of Partnership in Research:Improving Healthcare Outcomes in Rural Settings§ § !Upcoming: The Power of Partnership in Research: Improving Healthcare Outcomes in Underserved Communities§ !Helped to build a patient-centered research community inthe central statesHeld March 9–10, 2013, in Wichita, KSAugust 31 – September 1, 2013, in Memphis, TNUpcoming workshops posted at: http://www.pcori.org/events35