ACRM 90 th Annual Conference

Transcription

1 ACRM 90 th Annual Conference Medical Rehabilitation Research NIH Infrastructure Network Center for Rehabilitation Research Using Large Datasets Kenneth J. Ottenbacher University of Texas Medical Branch

2 Disclosure / Acknowledgements National Institutes of Health R01-HD (PI) NICHD/NIA R24-HD (PI) NICHD/NINDS/NIBIB K12-HD (PI) NICHD/NINDS P30-AG (Core PI) NIA UL1-RR (Core PI) NCATS Department of Education H133P (PI) DOE NIDRR

3 University of Texas Medical Branch UTMB

4 Outline 1. Big Data opportunities 2. Resources Center for Rehabilitation Research using Large Datasets (CRRLD) 3. Questions

5 Big Data Big Data The march of quantification, made possible by enormous new sources of data, will sweep through academia, business, health care and government. There is no area that is going to be untouched. Science 2011

6 The Challenges Large datasets can be overwhelming!

7 The Challenges Rehabilitation investigators are trained to conduct (prospective) clinical, patient-oriented research Not secondary analysis of large datasets.

8 The Opportunities Advances in bioinformatics, statistical computing, information technology and the internet have resulted in access to large datasets A large number of datasets are available that include information related to rehabilitation, recovery, aging and disability

9 Opportunities The Patient Protection and Affordable Care Act Public Law National Quality Indicators National Quality Forum Comparative Effectiveness Research Patient-Centered Outcomes Research Institute

10 NIH Big Data to Knowledge (BD2K) Areas of BD2K 1. Facilitating Broad Use of Data 2. Analysis Methods and Software 3. Enhancing Training 4. Centers of Excellence 10

11 Large Dataset Resources - CRRLD 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.

12 Consortium Rehabilitation Sciences Academic Division & Research Center University of Texas Medical Branch Uniform Data System for Medical Rehabilitation University at Buffalo Employment and Disability Institute Cornell University Center for Rehabilitation Outcomes Research Rehabilitation Institute of Chicago

13 Activities Raise Awareness Web Site Education & Training Data Directory Pilot Projects Visiting Scholars Program

14 Education &Training Seminars and workshops designed to raise awareness among investigators, educators, and practitioners regarding the importance of large data set analyses. Presented at national professional meetings and conferences. Create training materials & modules related to large database research Examples: 1) Security, privacy and IRB issues, 2) Multilevel data analysis, 3) Selection bias

15 Education &Training CRRLD Symposium Rehabilitation Research using Large Datasets: Issues and Methods Dr. Vincent Mor Brown University Symposium Speaker University of Texas Medical Branch October 24-25, 2013 Three External Speakers Pilot Project Presentations Advisory Board Meeting

16 Users Guide for Large Datasets Disability Statistics - American Community Survey 16

17 Pilot Projects Rehabilitation investigators work with R24 mentors/ collaborators on a project using a large dataset. Awards range from $15,000-$30,000 Applications due February 1 st

18 Visiting Scholars Visiting Scholars Program Investigators can be supported for periods of up to six months at one of the consortium institutions to work with experienced investigators using large datasets.

19 Status 15 pilot projects funded 11 hosted visiting scholars Taiwan Saudi Arabia

20 Data Directory

21 Data Directory Directory of databases including their purpose description of how to access the information, listing of the variables, and contact information. Summary/full profile of datasets including (links to) technical documentation (if available) Technical assistance for researchers (access, analyses)

22 Data Directory

23 23 Data Directory

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25 Additional Information Rehabilitation Sciences Academic Division & Research Center Phone: (409)

26 Acknowledgement National Institutes of Health National Center for Medical Rehabilitation Research (NCMRR), National Institute of Child Health and Human Development (NICHD), National Institute of Neurological Disorders and Stroke (NINDS). Grant# R24 HD065702