PCORI In Practice: Highlighting PCORnet Opportunities for General Internists September 8, 2015
Welcome and Introductions We welcome your questions and comments via the chat function on the right side of your screen We welcome your comments via Twitter to @PCORI and #PCORI An archive of this webinar will be posted to http://www.pcori.org/get-involved/pcori-in- practice/ following this event.
Today’s Presenters Tara Bishop, MD, MPH Rachael Fleurence, PhD PCORnet Researcher, Program Director, CER NYC CDRN, General Methods and Internist, Weill Cornell Infrastructure, PCORI Medical Center Alexander Low, MBA Leslie Dunne PCORnet Researcher, NYC Director of CDRN, Director of Strategy Development and & Development, Center Project Management, for Healthcare Informatics SGIM and Policy, Weill Cornell Medical Center
Agenda
Goals for Today • Familiarize the general internists community and researchers with PCORI, PCORnet, and future use of PCORI funded research findings Engage the community of SGIM members and general internists more actively in • PCORI’s work and funding • Encourage the community of general internists to activate their research capacity for conducting patient-centered comparative effectiveness research • Explore what other players in the general internists community are doing in the way of patient and other stakeholder engagement
PCORI in Practice: Highlighting PCORnet Opportunities for General Internists Society of General Internal Medicine Engaging PCORI Priority Stakeholders through SGIM Jennifer Kraschnewski, PI Leslie Dunne, SGIM Staff
SGIM Overview • National medical society of 3,000 physicians who are the primary internal medicine faculty of every medical school and major teaching hospital in the United States. • Our mission is to lead excellence, change, and innovation in clinical care, education, and research in general internal medicine to achieve health care delivery that is comprehensive, technologically-advanced and individualized
Engaging PCORI Priority Stakeholders through SGIM Project Goals: • To educate SGIM members about PCORI research and to provide avenues for better engagement in the PCORI research process by clinicians and clinician educators; and to provide PCORI with key perspectives from SGIM members regarding their participation in PCOR.
Project Activities • Presentations at the 2015 and 2016 SGIM Annual Meetings and SGIM Regional Meetings • Keynote by Dr. Joseph Selby • Sessions on health care systems and practices, patient engagement in the PCOR process, participation in big data studies and clinical trials done differently • Assessment of SGIM members about their attitudes and needs regarding participation in PCOR • Development of Training Tools on PCOR to share with SGIM members • White paper with lessons learned through the grant process
The Patient-Centered Outcomes Research Institute—Studying What Works for Whom Rachael Fleurence, PhD Program Director CER Methods and Infrastructure
Who We Are and What We Do
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
Why Is Our Work Needed? • For all the advances it produces, traditional healthcare research has not answered many questions patients face. • People want to know which preventive, diagnostic, or treatment option is best for them. • Patients and their clinicians need information they can understand and use.
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 that the study results will be useful and taken up in practice.
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 research guided by patients, caregivers, and the broader healthcare community. Our Strategic Goals: 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
Who Are Our Stakeholders? Caregivers/Family Members Clinicians Payers Purchasers Policy Makers Patients/Consumers Industry Hospitals/Health Systems Training Institutions Patient/Caregiver Advocacy Organizations
Our Research Focus
We Fund Comparative Clinical Effectiveness Research Research that…. • Generates and synthesizes evidence comparing benefits and harms of at least two different methods to prevent, diagnose, treat, and monitor a clinical condition or improve care delivery • Measures benefits in real-world populations • Informs a specific clinical or policy decision • Describes results in subgroups of people • Applies appropriate methods and data sources • Helps consumers, clinicians, purchasers, and policy makers make informed decisions that will improve care for individuals and populations Adapted from Initial National Priorities for Comparative Effectiveness Research , Institute of Medicine of the National Academies
Snapshot of Funded Projects Number of projects: 440 Amount awarded: $1.09 billion Number of states where we are funding research: 40 (plus the District of Columbia) As of August 18, 2015
Our Growing Research Portfolio
Portfolio Analysis: Primary Condition Where are funded projects Where is the most funding concentrated? (in millions)? As of August 18, 2015
The National Patient-Centered Clinical Research Network (PCORnet) 13 Clinical Data 21 Patient-Powered Coordinating Center Research Networks Research Networks Provides technical and logistical assistance under Health system-based Patients with a single the direction of a steering networks, such as condition form a committee and PCORI staff hospital systems; research network; $76.8 million awarded $16.8 million awarded On July 21, 2015, PCORI’s Board of Governors approved funding for 34 partner networks in Phase II. The awards include funding for seven additional networks to join PCORnet in its second phase, which will begin in fall 2015.
The National Patient-Centered Clinical Research Network (PCORnet) • Improve the nation’s capacity to conduct clinical research faster, more efficiently and less expensively, with greater power • Establish a large, highly representative, national patient-centered clinical research network with a focus on conducting randomized and observational comparative studies • Support a learning US healthcare system, which would allow for large- scale research to be conducted with greater accuracy and efficiency within real-world care-delivery systems
Fall 2015: Coming Into View PCORnet’s infrastructure built to: To leverage rich clinical electronic health data linking EHR data with private and public claims data (incl. CMS) Support both large observational studies and embedded randomized clinical trials Support novel models of participant-led research , integrate patient-preference science, and build robust patient- participation Involve patients, clinicians, and health systems leaders in governance and use of the network
DataMarts leveraging the CDRNs Electronic Health Data • Each CDRN Network will have 1-10 DataMarts • Total anticipated DataMarts: 75 • Annotated Data Dictionaries received: 62 • Software installation completed: 30 • Nine of 11 CDRNs have transformed data for at least one million individuals 25
CDRNs Disease Cohorts Organization Common Cohort Rare Cohort ADVANCE Diabetes Co-infection with HIV and hepatitis C virus CAPriCORN Anemia; Asthma Sickle cell disease; Recurrent C. Difficile colitis Great Plains Breast Cancer Amyotrophic Lateral Sclerosis (ALS) Collaborative Louisiana Clinical Diabetes Sickle Cell Disease, Rare Cancers Data Research Network NYC-CDRN Diabetes Cystic fibrosis Mid-South CDRN Coronary Heart Disease Sickle Cell Disease (SCD) (CHD) PEDSNet Inflammatory bowel disease Hypoplastic left heart syndrome PORTAL Colorectal Cancer Severe Congenital Heart Disease pSCANNER Congestive Heart Failure Kawasaki Disease P2ATH Atrial Fibrillation Idiopathic Pulmonary Fibrosis SCIHLS Osteoarthritis Pulmonary arterial hypertension
Recommend
More recommend
