Resear arch Done Differ erently ently: : The In Ins and Ou d Outs of Pat Patien ient- Ce Centered ed Outco comes mes Resear arch Ayodola Anise, MHS Program Officer, Healthcare Delivery and Disparities Research Program Clinical Directors Network, Inc. September 27, 2018 1
Roadm dmap • Inside PCORI • Focus on the Addressing Disparities Research Priority Area • Research Funding Opportunities at PCORI • How We Review Research Proposals • Engagement Funding Opportunities at PCORI • Q&A
Inside PCORI
Abo bout Us 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 4
Our Mission and Strategic Goals PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from re resear search h guide ded d by pa pati tients, ents, care regive vers, s, and d th the e br broade ader r healthcare althcare comm mmuni unity ty. . Our r Str Strat ategic egic Goals: als: Increase quantity, quality, and timeliness of useful, trustworthy research information available to support health decisions Speed the implementation and use of patient-centered outcomes research evidence Influence research funded by others to be more patient-centered 5
PCORI’s Work Answers Patients’ Questions Given my personal characteristics, conditions and preferences…
Key y Co Comp mponen ents ts of the Research We F Fund
Comp Co mparative tive Effecti ctiveness veness Resear arch • Directly comp mpare ares s tw two or r more re commonly used opt ptions ons to screen, prevent, diagnose, or treat conditions • Looks at whether A or r B is is be bett tter er and for r which h pa pati tients ents • Fills s evide dence ce gaps ps that are important to patients and other key stakeholders • Is conducted in re real al-worl orld d po popu pulations ations and real re al-world world se setti tting ngs
Pat Patien ient-Cent Centere erednes dness • Aims to answer questions or examine outcomes that matter to patients within the context of patient preferences and interests • Research questions and outcomes reflect what is important to patients and caregivers
Pat Patien ient t and St d Stake kehold holder r Engagement ment • Engages scientists, patients, and other stakeholders in an active and meaningful way throughout the entire study • Influences research to be patient-centered, relevant, and useful • Encourages successful uptake and use of research results Change ge in St Study dy Share e Their eir Refocus ocus Boost Inter ervent entions ons St Story/Present y/Present Outcom comes es Recruit uitmen ment St Study dy Findi dings ngs
Our National Priorities for Research Assessment ent of Prevent ention ion, , Diagno gnosis is, , Improving Healthcare Communication & and Treat atmen ent Option ons Systems Dissemination Research Accelerating PCOR and Addressing Disparities Methodological Research
Our National Priorities for Research Assessment of Prevention, Diagnosis, Research that: and Treatment Options • Compares the effectiveness and safety of alternative prevention, diagnosis, and treatment options • Determines which ones work best for different people with a particular health problem 12
Our National Priorities for Research Assessment of Prevention, Diagnosis, Research that: and Treatment Options • Compares health system – level approaches to improving access Impr proving ng Healt lthcare hcare Syste tems ms • Supports patient self-care, innovative use of health information technology, care coordination for complex conditions, and effective workforce deployment 13
Our Natio ional nal Pr Priorit orities ies for Resear arch Assessment of Prevention, Diagnosis, Research on: and Treatment Options • Providing information produced by CER Improving Healthcare Systems • Empowering people to ask for and Comm ommuni unication cation and d use the information Diss ssem eminat ination ion Resea esearch • Supporting shared decision making between patients and their providers 14
Our Natio ional nal Pr Priorit orities ies for Resear arch Assessment of Prevention, Diagnosis, Research on: and Treatment Options • Prevention, diagnosis, or treatment effectiveness Improving Healthcare Systems • Preferred clinical outcomes across Communication and patient populations at risk for Dissemination Research disparities • Health care required to achieve best Add ddre ressing ssing Di Disp spariti rities es outcomes in each population 15
Our Natio ional nal Pr Priorit orities ies for Resear arch Assessment of Prevention, Diagnosis, Research on: and Treatment Options • Building data infrastructure • Improving analytic methods Improving Healthcare Systems • Training researchers, patients, and Communication and other stakeholders to participate in Dissemination Research this research Addressing Disparities Acceler elerating ating Pa Patient tient-Center Centered ed Outc tcom omes es Resear esearch h and d Method thodologic ological al Resear esearch 16
Sn Snaps psho hot t of Funde ded d Pr Project jects Numbe ber r of funded ded awa wards: ds: More than 600 Amou ount nt awa warded ded: : More than $2 billion Numbe ber r of stat ates es where re we are we re fundi ding ng pr proje jects ts: : 41 (plus the District of Columbia) 17
Abo bout Our Research Por Portfolio olio AS OF APRIL 2018 18
PC PCORI RI Funds ds Resear arch on Hi High-Cos Cost, t, Hi High-Imp Impact act He Health alth Co Condi dition tions Numbe ber r of PCORI RI National Per Capita Conditi dition PCORI has funded 224 studies determining PCORI RI Studies dies Inve vestme tment nt Expenditure what works best in care for the 16 highest Stroke 10 $41 M $32,027 cost conditions in the United States. Heart Failure 14 $68 M Hepatitis (Chronic Viral B and C) 8 $59 M Chronic Obstructive Pulmonary Disease 17 $89 M Schizophrenia/Other Psychotic Disorders 11 $22 M Chronic Kidney Disease 16 $67 M Asthma 16 $51 M Atrial Fibrillation 3 $5 M Alzheimer's Disease/Dementia 12 $64 M Depression 35 $122 M Cancer 77 $285 M Ischemic Heart Disease 19 $94 M Osteoporosis 1 $14 M High-cost clinical conditions identified by the Centers for Medicare and Medicaid Services for 2015. HIV/AIDS 4 $8 M The PCORI CER portfolio includes 392 active/completed studies funded as of September 12, 2017. Arthritis 13 $43 M Analysis excludes methods studies, Pilots, PPRNs, CDRNs, and Engagement Awards. Diabetes 29 $68 M $15,920 19
Focus on the Addressing Disparities Research Priority Area
Addr Ad dressin ssing g Disp sparit rities ies Resear arch h Pr Priorit ority y Ar Area Missi ssion on PCORI’s Vision, Mission, Strategic Plan Addressing Disparities Priority Area Mission Statement To reduce disparities in healthcare outcomes and advance equity in health and healthcare Guiding Principle To support comparative effectiveness research that will identify best options for reducing and eliminating disparities 21
Addr Ad dressin ssing g Disp sparit rities ies Por Portfolio olio Goals ls • Identify high-priority research questions Iden enti tify fy Res esea earch h relevant to reducing and eliminating disparities in Questi tions ns health and healthcare outcomes • Fund comparative effectiveness research with Fund Rese search the highest potential to reduce and eliminate health and healthcare disparities • Disseminate and facilitate the adoption of Diss sseminat minate promising/best practices to reduce and Promisin ising/Bes g/Best t Practi tices ces eliminate health and healthcare disparities 22
Sn Snaps psho hot t of the Ad Addr dress essing ing Disp sparit arities ies Por Portfolio olio Numbe ber r of funded ded awa wards: ds: 81 Amou ount nt awa warded ded: : $250 million Numbe ber r of stat ates es where re we are re fundi ding ng pr projec ects ts: : 25 (plus the District of Columbia) 23
Ad Addr dressin ssing g Disp sparit rities ies Pop Popula lations tions of In Interes est # of Projects in Portfolio 70 70 59 59 27 27 19 19 6 4 Racial/Ethnic Low-Income Low Health Rural Persons with LGBTQ Minorities Literacy Disabilities 24
Ad Addr dressin ssing g Disp sparit rities ies Por Portfolio olio by Co y Condi ditio tion n Condition ndition # of of Projects jects Mental/Behavioral Health 16 Respiratory Diseases 11 Nutritional and Metabolic Disorders 10 Cardiovascular Health 8 Neurological Disorders 6 Multiple/co-morbid chronic conditions 5 Cancer 4 Reproductive and Perinatal Health 2 Liver Disease 2 Functional Limitation and Disabilities 1 Other 16 Total 81 81 25
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