Why a One F lo rida Pa rtne rship? 1 0 M ILLIO N P A TIEN TS 4 - - PDF document
2/3/2016 Building a Statewide Partnership for Patient Centered Research 1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES Why a One F lo rida
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1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
Building a Statewide Partnership for Patient Centered Research
Why a One F lo rida Pa rtne rship?
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
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1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
R e se ar c h to R e ality Afr ic an-Ame r ic an par tic ipation in c linic al tr ials
17 Ye ar s
5% to 15% 1% to 7.6%
Hispanic par tic ipation in c linic al tr ials
Disproportionate Disease Burden Not Representative of the Population
33%
Wome n’s par tic ipation in c linic al tr ials
? ? ? ?
R ur al R e side nts, Se r ious Me ntal Illne ss Childr e n Olde r Adults
T he Numbe r s
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
So me Que stio ns On the I nstitute o f Me dic ine T
Prio ritie s a nd Ma ny Re ma in Una nswe re d
Colore c tal Canc e r Sc re e ning
Should I and how often should I have colorectal cancer screening
Hype r te nsion
Wha What ar are the the app appropriate le levels of
blood pr pres essure con control? l? For For Afric African Ame Americ icans? Hisp Hispanic ics? Whi White non non‐Hispa spanics? s?
De me ntia
What are the best pharmacologic and non‐ pharmacologic interventions for individuals with dementia who are living at home with their caregivers?
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Cre a te a n E nduring I nfra struc ture F
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
Inclusive of Diverse Populations What Works Better for Whom Under What Circumstances? Conducted in Real World Settings to Accelerate Translation to Practice and Adoption
The Science of Fostering the Uptake of Evidence‐ Based Best Practices Into Diverse Health Care Settings
Co ho rt Disc o ve ry Co mpa ra tive E ffe c tive ne ss Re se a rc h Pra g ma tic Clinic a l T ria ls I mple me nta tio n Sc ie nc e Studie s
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Sta te wide Pa rtne rs
University of Florida and UF Health Florida State University and the Regional Campus Practice Partners University of Miami and UHealth Orlando Health Florida Hospital Tallahassee Memorial HealthCare Health Choice Network Bond Community Health Center Inc. Miami Children’s Health System WellFlorida Council
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The University of Florida, the University of Miami and Florida State University unite health systems, health plans, providers and patients to form the OneFlorida Clinical Research Consortium.
ONE F L ORI DA CL I NI CAL RE SE ARCH CONSORT I UM
2013
Uniting the Sta te fo r Clinic a l Re se a rc h
2010-11 2012 2009 2014 2015 2015
The OneFlorida Cancer Control Alliance strengthens statewide infrastructure to reduce disparities in cancer control and prevention with funding from the James and Ester King Biomedical Research Program.
ONE F L ORI DA CANCE R CONT ROL AL L I ANCE
2014
Uniting the Sta te fo r Clinic a l Re se a rc h
2010-11 2012 2013 2009 2015 2015
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ONE F L ORI DA CL I NI CAL DAT A RE SE ARCH NE T WORK
The Patient‐Centered Outcomes Research Institute approves a funding award designating the OneFlorida Clinical Research Consortium as one of 13 clinical data research networks nationwide.
2015
Uniting the Sta te fo r Clinic a l Re se a rc h
2010-11 2012 2013 2014 2009 2015
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
PCORne t Pa rtne rs
Accelerating Data Value Across a National Community Health Center Network (ADVANCE) University of Chicago: Chicago Area Patient Centered Outcomes Research Network (CAPriCORN) Greater Plains Collaborative (GPS) Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance Learning (PORTAL) Network Mid‐South CDRN Patient‐Centered Network of Learning Health Systems (LHSNet) OneFlorida Clinical Data Research Network PaTH: Towards a Learning Health System Louisiana CDRN (LACDRN) National Pediatric Health Learning System (PEDSnet) New York City Clinical Data Research Network (NYC‐ CDRN) Patient‐oriented SCAlable National Network for Effectiveness Research (pSCANNER) Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS)
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Sc ie ntific Adviso ry Co mmitte e
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Peter J. Embi, M.D., M.S., F.A.C.P., F.A.C.M.I.
Associate Professor and Vice Chair, Department of Biomedical Informatics Division Director, Division of Clinical and Translational Informatics Chief Research Information Officer, Wexner Medical Center Associate Dean for Research Informatics, College of Medicine Physician, Department of Internal Medicine, Division of Rheumatology & Immunology, The Ohio State University
Ross Brownson, Ph.D.
Director, Prevention Research Center Washington University in St. Louis
Electra Paskett, Ph.D.
Marion N. Rowley Designated Chair In Cancer Professor of Cancer Research, Division of Cancer Prevention and Control, Department of Internal Medicine, College of Medicine, The Ohio State University
Albert W. Wu, M.D. M.P.H., F.A.C.P.
Director, Center for Health Services and Outcomes Research Director, Ph.D. Program in Health Services Research & Policy President‐Elect, Faculty Senate Johns Hopkins Bloomberg School of Public Health
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BILL HOGAN
Un University of
Florida
CARL PEPINE
Un University of
Florida
ALISON FRASE
Joshua shua Fras ase Foundat ndation
MARK ROH
Orlando lando Hea Health
DAVE JANICKE
Un University of
Florida
JOE NADGLOWSKI
Obe Obesity Ac Action Coa Coalition
LINDA COTTLER
Un University of
Florida
MIKE GUTTER
Un University of
Florida
MIKE MUSZYNSKI
Flo Florida Sta State Un University
OLVEEN CARRASQUILLO
Un University of
Miam ami
PETER CAREK
Un University of
Florida
RHONDA COOPER‐DeHOFF
Un University of
Florida
STEVEN SMITH
Flo Florida Hos Hospital
TEMPLE ROBINSON
Bon Bond Community unity Hea Health Cen Center In Inc.
MYRA HURT
Flo Florida Sta State Un University
MICHAEL WEAVER
Un University of
Florida
PRABIR MANDAL
Ed Edward rd Wa Wate ters Col College
RENEE REAMS
Flo Florida A&M A&M Un University
ANDY BRICKMAN
He Health Cho Choice Ne Netw twork
THOMAS GEORGE
Un University of
Florida
CHRIS SCUDERI
Un University of
Florida
BETH KIDDER
Age Agency fo for He Health Car Care Ad Admini nistration
CHRISTY EVANS
Un University of
Florida
BETSY SHENKMAN
Un University of
Florida
DUSHYANTHA JAYAWEERA
Un University of
Miam ami
BARRY BYRNE
Un University of
Florida
JENNIFER McCAFFERTY
Mi Miam ami Children’ ildren’s He Health Sys System
DAVE NELSON
Un University of
Florida
Pro g ra ms a nd Wo rkg ro ups
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
Data Query & Analytics Honest Brokers PROs IT Community Clinician/Health Systems Engagement Practice Facilitation Integration, Implementation, and MoC Multi‐Network Study Support Minority Education Program Hypertension Obesity DMD Rare Disease Tobacco Cessation Participant Recruitment Information Dissemination
Integrated Clinical Research Program Patient Population Program Data Trust Program Patient and Citizen Scientist Program
Carl Pepine, Michael Muszynski,,Quintina Crawford, Nadine Zemon Rhonda Cooper‐DeHoff, Julie Johnson, Claudio Harris, David Janicke, Steven Smith, Joe Nadglowski, Carlos Maeztu, Myrtle Graham, Krista Vandenborne, Barry Byrne, Alison Frase Olveen Carrasquillo, Linda Cottler, Carlos Maetzu William Hogan, Nick Tsinoremas, Temple Robinson, Ravi Bhosale
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I nte g ra te d Clinic a l Re se a rc h Pro g ra m
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Re c r uitme nt Health care settings, clinicians, community settings E xpansion Plans are in place to expand clinician engagement across the state and infrastructure support to partner institutions. Involve me nt Community clinicians On the Road Design Studios Translational and Implementation Science Studios T he L e ar ning He alth Syste m Maintenance of Certification Integration into Workflow Engagement
Co ho rt De ve lo pme nt a nd Co mputa b le Phe no type s
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
Obe sity
Focus: Diversity in Obesity — Factors related to the development, prevention, and treatment of obesity in diverse populations, including but not limited to race/ethnicity, age, socioeconomic status, sex, and geographic area. Computable Phenotype: Defining Healthy Obesity; Early Childhood Obesity (in progress); Severe Obesity: Pediatric and Adult (in progress); Obesity Treatment: Pediatric and Adult (in progress) Next Steps: Participating in two PCORnet obesity studies; defining and developing two study proposals based on computable phenotypes
Duc he nne Musc ular Dystr
Focus: Submitting the Bone Health Study to PCORI Computable Phenotype: Individuals with Duchenne Muscular Dystrophy Next Steps: A possible collaboration with PPMD, Duchenne Connect, the CDC, and the University of South Carolina
Hype r te nsion
Focus: Identifying characteristics that predict resistant hypertension and assessing CV risk associated with multiple achieved BP targets Computable Phenotype: Adults with 1) treatment resistant hypertension and 2) hypertension with or without diabetes associated CV outcomes Next Steps: Deploy and refine algorithms to identify cohorts and then perform analyses
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T he Citize n Sc ie ntist Pro g ra m
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
Re c r uitme nt The team has grown from six community members to 11, ranging in age from early 20s to mid‐80s and representing a variety of cultural perspectives. E xpansion Plans are in place to expand community engagement across the state and infrastructure support to partner institutions. Involve me nt The Citizen Scientists are fully integrated into the consortium's infrastructure and have served on a variety
feedback on more than five proposals since September.
F lo rida Me dic a id a nd Me dic a re *, F lo rida Ca nc e r Re g istry a nd F lo rida Vita l Sta tistic s with Ide ntifying info rma tio n L imite d Da ta Se ts fro m E HRs fro m Clinic a l Pa rtne rs Pa tie nt Co nse nt fo r Re g istry a nd/ o r Study Pa rtic ipa tio n PROs a nd Othe r Study Da ta Co lle c tio n DAT A ACCE SS
Data Captur e Str ate gie s E T L Pro c e sse d a nd T a b le t-Ba se d E le c tro nic Syste ms One F lor ida Data T r ust L imite d Data Se t
1
One F lor ida Re se ar c h Mar t One F lor ida Data T r ust Que r y
✔Suc c e ss
2
Submit Pr
lor ida IR B and Ste e r ing Committe e
✔
Appr
3
L
s
fo r L imite d Da ta Se ts IDs a nd/ o r Pa tie nt Co nta c t Info
4
Data Pr
* F lo rida Me dic a re Pe nding
T he One F lo rida Da ta T rust
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Ac c o mplishme nts
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
Orlando Health, Tallahassee Memorial Health Care, UF Health, Bond Clinic, Health Choice Network, Florida Hospital, WellFlorida and Miami Children’s Health System Orlando Health, Tallahassee Memorial Health Care, UF Health, Bond Clinic, Health Choice Network, Florida Hospital, WellFlorida and Miami Children’s Health System AHCA, UF Health Orlando Health, Tallahassee Memorial Health Care, UF Health, Health Choice Network, Florida Hospital, and Miami Children’s Health System
Next Steps: State wide I RB tr aining
MOU / DUA Ag re e me nts Co mple te Da ta T rust I RB Pro to c o l Co mple te 3 Ye a rs o f F lo rida Me dic a id Da ta Mig ra te d into the Da ta T rust One F lo rida I RB Ag re e me nts Co mple te
RE SE ARCH PRI ORI T I E S
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Curre nt a nd Upc o ming Re se a rc h E nde a vo rs
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PCOR I He alth Syste ms De monstr ation Pr
De ve lo ping prio rity to pic s fo r da ta -drive n re se a rc h a c tivitie s in PCORne t tha t a re o f inte re st to he a lth syste ms a nd c linic ia ns Pe diatr ic s Cr
Re se ar c h Gr
E nc o ura g ing c ro ss-PCORne t c o lla b o ra tio ns a ro und pe dia tric he a lth He ar t He alth Cr
Re se ar c h Gr
E nc o ura g ing c ro ss-PCORne t c o lla b o ra tio ns a ro und he a rt he a lth Canc e r Pr e ve ntion E xe c uting se ve ra l studie s thro ug h the One F lo rida Ca nc e r Co ntro l Allia nc e
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PCORI He a lth Syste ms De mo nstra tio n Pro je c t
T a lla ha sse e Me mo ria l Ho spita l Mia mi Childre n’ s Ho spita l UF He a lth
In 2015, the PCORI Board of Governors approved up to $5 million in total costs to support engagement and collaboration between leaders of health systems and the health data networks that make up PCORnet. OneFlorida responded to this opportunity with a cross‐consortium team to identify three research priorities.
F lo rida Ho spita l UHe a lth F lo rida Sta te Unive rsity
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1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
PCORI He a lth Syste ms De mo nstra tio n Pro je c t: Prio rity Re se a rc h T
lo rida
What is the effectiveness of multi‐level interventions aimed at the health care delivery system and the patient and family
Do patients with co‐occurring physical and mental health conditions receive mental health services and recommended care for their chronic physical health conditions? Developing computable phenotypes and predictive algorithms for high risk children related to:
Pha se I I : PCORI He a lth Syste ms De mo nstra tio n Pro je c t
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Release of a limited competition funding announcement for PCORnet networks in early 2016, following the convening of health systems leaders How can OneFlorida position itself to be competitive for these awards? PCORI will fund up to five, one‐year research studies on those priority topics
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Stimulate cross‐network PCORnet research
PCORI Cro ss-Cutting Re se a rc h Gro ups
Communities of individuals from more than one PCORnet Network organized around a specific issue that impacts health
Disparities, Vulnerable Populations, and Safety‐net Providers; and Pediatrics.
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Provide strong common purpose across PCORnet Share resources throughout PCORnet Enhance CDRN‐PPRN collaboration Provide entry point for researchers
Potential OneFlorida Research Opportunities: Comparative Effectiveness Research Pragmatic Clinical Trials Implementation Science Studies
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He a rt He a lth Cro ss-Cutting Re se a rc h Gro up
Launch three condition groups, including Hypertension and Congestive Heart Failure, and invite networks to suggest a focus for the third condition group
ST E P 01
Complete
Convene condition groups, develop list of research teams and study concepts, and vet with patient interest groups
ST E P 02
Develop and run a set of preliminary computable phenotypes and core data elements for each condition within each participating CDRN
ST E P 03
Present computable phenotype data from participating CDRNs at AHA Epidemiology meeting and invite outside researchers to propose research ideas
ST E P 04
Refine research team proposals
ST E P 05
February 2016 February 2016 March 2016 April‐May 2016 OneFlorida Steering Committee Member Rhonda Cooper‐DeHoff, Ph.D., will serve as director of the HTN interest group for this CCRG.
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1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
Pe dia tric s Cro ss-Cutting Re se a rc h Gro up
Creating a OneFlorida Child Health Alliance Resources Needed Research Synergies Emphasis Areas
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Ca nc e r Pre ve ntio n
HPV R e se ar c h Stephanie Staras, Ph.D., received NIH funding to improve and test health information technology in six OneFlorida‐ affiliated clinics that has helped increase the odds of adolescents starting the HPV vaccine series. T
Three studies are about to be launched that examine tobacco cessation in OneFlorida‐affiliated clinics and health systems among adults in primary care, pediatric cancer survivors and pediatric oncology patients.
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OUR PROGRE SS
1 0 M ILLIO N P A TIEN TS 4 , 1 0 0 P HYSIC IA N P RO V ID ERS 1 , 2 4 0 P RA C TIC ES/ C LIN IC S 2 2 HO SP ITA LS 6 7 C O UN TIES
Re se a rc he r F unding Me c ha nism Pro je c t T itle Sta tus Julie Johnson & David Nelson NIH (U‐54) The OPTIMUM (Optimizing Precision Therapy in Medication USE among Minorities) Transdisciplinary Collaborative Center Not funded Folakemi Odedina American Cancer Society Validation of a Model of Prostate Cancer Care and Survivorship for Black Men Not funded Folakemi Odedina State of Florida (Bankhead‐Coley) Validation of a Model of Prostate Cancer Care and Survivorship for Black Men Submitted July 2015, currently under review Stephanie Staras NCI (R21) Maximizing HPV Vaccination: Real‐time Reminders, Guidance and Recommendations Funded Janice Krieger State of Florida (Bankhead‐Coley) Optimization, Dissemination, and Implementation of Tailored Clinical Intervention for Reducing Colorectal Cancer Health Disparities Submitted July 2015, currently under review Keith Muller PCORI (Methods) Ethical Design and Analysis of Patient‐Centered Cluster‐ Randomized Trials over Time Submitted Fall 2015 Carl Pepine PCORI (Large Pragmatic Trials) Ischemia‐WISE (Will Intensive Strategies Reduce Events in Subjects with Non‐Obstructive Coronary Artery Disease (CAD)) Submitted July 2015, will be reviewed January 2016 Rhonda Cooper‐DeHoff UF CTSI (Translational Pilot Program) Optimizing Antihypertensive Medication in Primary Care Funded Chris Harle AHRQ (R01) Designing User‐Centered Decision Support Tools for Chronic Pain in Primary Care Received favorable score, anticipating NOA
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Re se a rc he r F unding Me c ha nism Pro je c t T itle Sta tus Diana Wilke NINR Optimizing Pain and Respiratory Care for Adolescents and Adults with Sickle Cell Disease in Rural and Urban Northern Florida Submitted Gail Keenan NINR Applying Big Data Analytics to Standardized Nursing Data: Quality of Palliative Care among Hospitalized Cancer and Cardiac Patients Submitted
Bob Cook
NIH Southern HIV Alcohol Research Consortium Submitted
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Where Can We Partner?