ACRM-ASNR Pre-Conference Institute
Progress in Rehabilitation Research
October 12, 2011
Atlanta, Georgia
NIH R24 Infrastructure Networks:
Providing Resources for
Rehabilitation Research
ACRM-ASNR Pre-Conference Institute
Morning:
Center for Rehabilitation Research using Large Datasets
University of Texas Medical Branch, Galveston, TX
Afternoon:
Boston Rehabilitation Outcomes Measurement Center
Boston University - Health & Disability Research Institute, Boston, MA
ACRM-ASNR Pre-Conference Institute
Morning Agenda
8:00 - 8:15
Welcome and Introduction
8:15 - 8:50
Center for Rehabilitation Research Using Large Datasets
8:50 - 9:30
Overview of large datasets management
9:30 - 10:15
Perspectives on analyzing large datasets
10:15 - 10:45
Break
10:45 - 11:00
Ethical Considerations (IRB, privacy, HIPAA) in large
database research
11:00 - 12:00
Questions and Discussion
12:00 - 1:00
Lunch (provided) and informal discussion with presenters
ACRM-ASNR Pre-Conference Institute
Afternoon Agenda
1:00 - 1:30
Boston Rehabilitation Outcomes Measurement Center
Overview
1:30- 2:00
Incorporating Patient Reported Outcome Measures in
Medical Rehabilitation Research: Factors to Consider
2:00 - 2:30
Selecting and Standardizing Performance-Based Measures
2:30 - 3:00
Using Instrumented Outcome Measures: What’s New
in Wearable Sensor Technology?
3:00 - 3:30
Questions and Discussion
3:30 - 4:00
Break
4:00 - 5:30
Case discussion
Center for Rehabilitation
Research using Large Datasets
Kenneth J. Ottenbacher
University of Texas Medical Branch
Galveston, TX
http://rehabsciences.utmb.edu/r24
Disclosures
National Institutes of Health
Grants: R24 HD065702; R01 AG017638; K12 HD055929;
T32 HD007539
PI: Kenneth J. Ottenbacher
National Center for Medical Rehabilitation Research
(NICHD); National Institute on Neurological Disorders
and Stroke; and National Institute on Aging
Department of Education
Grants: H133G080163; H133P110012
PI: Kenneth J. Ottenbacher
National Institute on Disability and Rehabilitation
Research
Learning Objectives
• Describe the purpose and mission of the NIH
R24 Infrastructure Network Program
• Identify the services available through the
R24 Infrastructure Networks/Centers focused
on outcomes research
• Learn how to apply for pilot funding, training
opportunities, and visiting scientist positions
• Understand basic issues and challenges in
conducting outcomes research using
secondary analysis of large datasets
Galveston, TX
Galveston
University of Texas Medical Branch
UTMB
Academic Health Science Center
Academic Programs
• School of Medicine
• School of Nursing
• School of Health
Professions
• Graduate School of
Biomedical Sciences
Areas of Research: Aging, Tropical/Infectious
Disease, Structural Biology, Minority (Hispanic)
Health, Neuroscience, 3 WHO Collaborating
Centers
Outline
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•
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Mission / Description
Need for the Center
Structure & Partners
Programs & Activities
Resources
Future Plans
NIH Rehabilitation Research Support
The R24 rehabilitation research infrastructure
program, supported by the NIH, currently
funds seven centers around the country.
http://www.ncmrr.org
• Engineering for Neurological Rehabilitation
Rehabilitation Institute of Chicago and
Northwestern University
• Center for Translation of Rehabilitation Engineering
Advances and Technology
Dartmouth College & Simbex
Infrastructure Grant
• Boston Rehabilitation Outcomes Measurement Center
Boston University
• Core for Molecular and Functional Outcome
Measures in Rehabilitation Medicine
Research Center for Genetic Medicine at Children’s
National Medical Center, Washington DC
• National Center for Simulation in Rehabilitation
Research
Stanford University and Simbios
• Medical Rehabilitation Research Infrastructure
Program in Muscle
University of California at San Diego
Center for Rehabilitation
Research using Large
Datasets
The goal of the Center is to build
rehabilitation research capacity by
increasing the quantity and quality of
rehabilitation outcomes research
using large administrative and
research datasets.
Need for the Center
• Rehabilitation investigators are trained to
conduct (prospective) clinical, patientoriented research, not secondary data
analysis
• A large number of datasets are available
that include information related to
rehabilitation and disability
• Advances in bioinformatics, information
technology and the internet have resulted
in easier access to aggregated information
CRRLD Consortium Partners
• Rehabilitation Sciences Academic
Division & Research Center (University of
Texas Medical Branch)
• Center for Rehabilitation Outcomes
Research (Rehabilitation Institute of
Chicago)
• Uniform Data System for Medical
Rehabilitation (University at Buffalo)
• Employment and Disability Institute
(Cornell University)
Center for Rehabilitation Research using Large Datasets
Raise
Awareness
Teach
Knowledge
& Skills
Provide in
Person
Training
Conduct
Pilot
Projects
Interdisciplinary
Collaborative
Research
OBJECTIVE 1
Education
& Training
• Courses
• Workshops
• Symposium
• Modules
OBJECTIVE 2
Pilot
Projects
• Faculty Mentors
OBJECTIVE 3
Collaboration
• Visiting Scholars
Monitoring and Evaluation
Creation of Best Practices for Reporting
Dataset Research in Rehabilitation
Increase Research Capacity
 Web Site  Database Directory  Algorithm Repository
Activities
• Raise Awareness. Seminars and workshops
designed to raise awareness among investigators,
educators, and practitioners regarding the
importance of secondary data analysis. These will
be presented at professional meetings and
conferences.
• Web Site. Establish a website that will provide
information generated from Center activities and
programs. For example, training materials and
modules will be available on the web.
http://rehabsciences.utmb.edu/r24
http://rehabsciences.utmb.edu/r24
Activities
• Education and Training. Create training materials &
modules related to large database research.
Examples: 1) Security, privacy and IRB issues; 2)
Data management (general); and 3) Methods of data
analysis including missing data and selection bias.
• Data Directory. Develop a directory of existing
datasets including descriptions of how to access
the information, a listing of the variables contained
in the dataset, the purpose of the dataset, and
contact information.
Activities
• Visiting Scholars Program. Rehabilitation
investigators will work with experienced scientists
at one of the consortium institutions, using large
datasets to address questions important to
rehabilitation and disability outcomes. Support is
provided up to six months.
• Pilot Project Program. Funding available for pilot
studies in which rehabilitation investigators
conduct research in collaboration with a CRRLD
mentor/collaborator using a large dataset.
Pilot Studies
• Functional Independence and Healthcare Experiences
Following Discharge from Inpatient Rehabilitation
Juli Wylegala, PhD, PT, University of Buffalo
• Comparison of Rehabilitation Outcomes of Veterans and
Medicare Beneficiates
Diane M. Collins, PhD, OTR, University of Pittsburgh
• Predictors of Functional Disparities among Individuals
Living with Spinal Cord Injury
Denise Fyffe, PhD, Kessler Foundation Research Center
• Frailty transitions and frailty-free life expectancy among
older Mexican Americans: Gender differences
Soham Al Snih, MD, PhD, University of Texas Medical
Branch
Sample Datasets
• Centers for Medicare and Medicaid Services
• Uniform Data System for Medical Rehabilitation
• Medical Expenditure Panel Survey (AHRQ)
• Hispanice Established Population Epidemiological
Study of the Elderly (NIA)
• American Community Survey (U.S. Census Bureau)
• Health and Retirement Survey (NIA)
• Mexican Health and Aging Study (NIA)
• National Health and Nutrition Examination Survey
(CDC)
UDSMR Data
• Currently about 850 facilities
subscribe to the UDS database
service
• Database contains records from 1987 to
present (>10 million records)
• Proprietary database requires license
and data-use agreement
• Includes data on non-Medicare patients
http://www.udsmr.org
Sample Data Files
• Inpatient Rehabilitation Facility - Patient
Assessment Instrument (IRF-PAI) files
(2002 – 2009)
• MedPAR files (1999 - 2009)
• Beneficiary Summary files (1999 - 2009)
• Provider of Service (2001- 2009)
• Area Resource File (2008 Access: HRSA)
http://www3.cms.gov/InpatientRehabFacPPS/04_IRFPAI.asp
Collaboration
Opportunities for
collaboration on
rehabilitation
outcomes research
using large
datasets.
Doing outcomes
research is a lot like
raising children… you
always think you are
going to do a better job
next time.
The
End
http://rehabsciences.utmb.edu/r24/ACRM.asp
Contact Information
Center for Rehabilitation Research using Large
Datasets
Rehabilitation Sciences Academic Division
& Research Center
301 University Boulevard
Galveston, Texas 77555-1137
Phone: (409) 747-1637
Fax: (409) 747-1638
Email: rehab.info@utmb.edu