Increasing Access to Research Data for Secondary Data Analysis in the Rehabilitation & Disability Fields AcademyHealth Annual Conference 2017 New Orleans, LA
Disclosures • NIH grant support: P2C HD065702. K01 HD086290. • We have no financial interests to disclose.
Presenters • Module 1: Amol M. Karmarkar, Assistant Professor, Co- Director of Techniques Development, Center for Large Data Research and Data Sharing in Rehabilitation, University of Texas Medical Branch, amkarmar@utmb.edu • Module 2: Alison M. Stroud, Archive Manager, Archive of Data on Disability to Enable Policy and research, National Archive of Data on Arts and Culture, ICPSR, alistrou@umich.edu. • Module 3: Chih-Ying (Cynthia) Li, Postdoctoral Fellow, Division of Rehabilitation Sciences, University of Texas Medical Branch, chili@utmb.edu
Presentation Outline • Overview • Module 1 : Motivation behind data archiving & sharing activities, overview of the existing ‘data repositories’ supported by the National Institutes of Health (NIH), data directory & ADDEP. • Module 2 : ICPSR Data Curation process & workflow, Open ICPSR, ADDEP • Module 3 : Example of Accessing & Analyzing Archived Data • Discussion & QA
Medical Rehabilitation Research Infrastructure Network (MRRIN) Center for Large Data Research & Data Sharing in Rehabilitation The CLDR includes a consortium devoted to building rehabilitation research capacity by increasing the quantity and quality of outcomes research using large data. The CLDR also supports data sharing and archiving of completed rehabilitation research studies. Activities supported by the CLDR Education & Training Data Directory Pilot Projects Visiting Scholars Data Archiving Workshops, on-line Listing of available Collaborative projects Collaborate with Support for linking / seminars and datasets including with CLDR mentors / CLDR mentors using merging and archiving training modules to purpose, variables, investigators using large rehabilitation data from completed develop skills in access and contact large data relate to datasets. Support rehabilitation studies large data research information rehabilitation & for up to six months to promote secondary recovery data analyses Visit us at: http://rehabsciences.utmb.edu/cldr Supported by the National Institutes of Health – the NICHD/NCMRR, the NINDS, and the NIBIB # P2C-HD065702
https://ncmrr.org/about/
Key Players
Key Players http://annals.org/aim/article/2630766/data-sharing-statements-clinical-trials-requirement-international-committee-medical-journal http://www.nejm.org/doi/pdf/10.1056/NEJMe1705439
Data Repositories Supported by the NIH
Center for Large Data Research & Data Sharing in Rehabilitation
Data Access Data Archive http://www.icpsr.umich.edu/icpsrweb/content/addep/index.html http://www.disabilitystatistics.org/sources-rehab.cfm
Module 2 Sharing & Using Data at ADDEP/ICPSR Alison M. Stroud, Archive Manager, Archive of Data on Disability to Enable Policy and research, National Archive of Data on Arts and Culture, ICPSR, alistrou@umich.edu.
Lots of Data Sharing! • Over 1,800 research data repositories listed on re3data.org • Lots of open access to research data out there – but are the data usable for the purposes of further research? Will it increase research impact?
Some researchers still reluctant to share data... • Protection of confidentiality of study participants • Concerns about getting “scooped” • Concerns about errors in data and data documentation • Limited resources for preparing data & documentation Don’t ¡worry. ¡ICPSR’s ¡got ¡your ¡back! ¡
Has anyone in the audience had similar concerns or experiences? … Or maybe just didn’t know where to start?
This is where ICPSR comes in... ICPSR - International Leader in Data Stewardship and Data Analysis Services • Over 10,000 studies archived at ICPSR • 4.82 Million variables tagged • Over 70,000 citations in the searchable bibliography • 750+ Member Institutions • ~1,000 Summer training participants annually
Archive of Data on Disability to Enable Policy and research (ADDEP)
Curation Services Ahh! These • Processing Planning services are divine!! • Disclosure Review • Missing Data Standardization • Outliers, Wild Codes • Variable-Level Metadata • ICPSR Codebook • Study Description • Quality Checks • Dissemination in SAS, SPSS, Stata, R, ASCII
ICPSR’s Curation Process is rigorous
Metadata Ensures Use and Impact • Summary ¡of ¡the ¡data ¡collec0on ¡ • Access ¡condi0ons ¡ • Methodology ¡ • Data ¡cita0on ¡and ¡bibliography ¡ • Scope ¡
Impact of data and materials • Views, Downloads • Publications • Inform design of new studies • Training, Student Use • Grant Applications (funding opportunities!) • Altmetrics Use ¡of ¡Study ¡(Children ¡with ¡Disabili@es) ¡-‑ ¡released ¡in ¡Oct ¡2016 ¡
Example of funding opportunity https://www.utmb.edu/cldr/pilot-projects/data-sharing-studies
Ensuring Researcher Credit for Data Data Citation Markides, Kyriakos, Nai-Wei Chen, Ronald Angel, Raymond Authors Palmer, and James Graham. Hispanic Established Populations for the Epidemiologic Study of the Elderly (HEPESE) Wave 7, 2010-2011 [Arizona, California, Colorado, New Mexico, and Texas]. ICPSR36537-v2. Ann Arbor, MI: Inter-university Persistent Consortium for Political and Social Research [distributor], Identifer 2016-12-05. http://doi.org/10.3886/ICPSR36537.v2 My study is famous!!!
Yes, we have self-publishing options
openICPSR v. ADDEP/ICPSR < ¡ Cura@on ¡Services ¡ For ¡long ¡term ¡data ¡re-‑usability, ¡growing ¡publica0ons, ¡etc…. ¡ Full ¡cura0on ¡is ¡usually ¡best. ¡
Outreach and spreading awareness ADDEP and ICPSR also offer: • Webinars • Social media • Connections to member institutions • Summer Program courses (workshop on June 29-30)
Let’s take a look at the website Also, openICPSR if time .
Module 3 Example of Accessing & Analyzing Archived Data Chih-Ying (Cynthia) Li, PhD Postdoctoral Fellow, Division of Rehabilitation Sciences, University of Texas Medical Branch, chili@utmb.edu
Finding Data Accessing Data Using Data Lessons Learned Where to Start? ICPSR https://www.icpsr.umich.edu/icpsrweb/
Finding Data Accessing Data Using Data Lessons Learned ICPSR Webpage
Finding Data Accessing Data Using Data Lessons Learned
Finding Data Accessing Data Using Data Lessons Learned • Study Relevance • Title A-Z • Released/Updated • Time Period • Most Cited in ICPSR Bib. • Variable Relevance
Finding Data Accessing Data Using Data Lessons Learned
Finding Data Accessing Data Using Data Lessons Learned Study Information § PI’s § Summary § Funding § Related publications § Access ( publically available vs any restrictions ) § Scope ( units, geographic coverage, time period ) § Methodology ( purpose, design, description of variables, response rates ) § List of Variables § Datasets
Finding Data Accessing Data Using Data Lessons Learned Search Variables You Want
Finding Data Accessing Data Using Data Lessons Learned Search/Compare Variables
Finding Data Accessing Data Using Data Lessons Learned Search/Compare Variables
Finding Data Accessing Data Using Data Lessons Learned
Finding Data Accessing Data Using Data Lessons Learned ICPSR Membership List
Finding Data Accessing Data Using Data Lessons Learned
Finding Data Accessing Data Using Data Lessons Learned
Finding Data Accessing Data Using Data Lessons Learned
Finding Data Accessing Data Using Data Lessons Learned
Finding Data Accessing Data Using Data Lessons Learned
Finding Data Accessing Data Using Data Lessons Learned Download/Upload Data FREE
Finding Data Accessing Data Using Data Lessons Learned § Research Question: Is depression at discharge from inpatient rehabilitation associated with functional decline over the following year for the underserved individuals with stroke ? § Sample: 840 individuals with stroke with complete data at inpatient rehabilitation discharge and 1-year follow-up - Average age : 68.3 (SD: 13.0) years - Sex : 52.1% female - Race/Ethnicity : 76.2% white, 17.3% black, 4.5% Hispanic
Finding Data Accessing Data Using Data Lessons Learned 25% 22.5% 20% 17.2% 15% 12.8% 10% 10.1% 5% 0% Self-care Decline Mobility Decline No Depressive Symptomology Depressive Symptomology Figure. Rates from a multilevel model adjusted for patients’ age, sex, race/ethnicity, comorbidity count, level of social support, and whether or not they received any additional therapy over 3 months after inpatient rehabilitation discharge.
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