1. Building a Shared Electronic Data Collection Instrument Library
Raymond Balise, Sean Banks, Fatima Barnes, Robert Butsch, Ceci Chamorro, Michelle Fernandez, Robert Geller, David Gutman, Eric Kaufmann,
Jessie Lee, Amanda Miller, Brenda Minor, Stephanie Oppenheimer, Luis Sanchez, Laura Shackleford, Nachiketh Soodana-Prakash, Mei Xue, Haydee Zimmerman
Building a Shared Electronic Data Collection Instrument Library
Future directions – Customized Institutional Libraries
How to go about building your own institutional library.
Consider the following:
Determine the content
Types of data collection forms
surveys
questionnaires
tests
scales
other data capture tools
b) Curated forms must be:
validated (shown to demonstrate reliability in a defined population) and/or standardized
approved for public domain distribution (copyright holder agreement or good faith effort)
capable of being translated into REDCap field types and coding
c) User-submitted forms must be approved for public domain and built in REDCap by the user
2) Adhere to best practices
identify copyright holder and obtain approval to
distribute the work publically
create derivative work (if translating)
search the literature for validation references, frequency of use, and feedback from the clinical community
ensure all documents, e.g. coding, validation references associated with the instrument are version consistent
get the human resources you need to support the effort, e.g. obtaining permissions, reviewing literature, building and testing the instrument
Conclusion
The REDCap Shared Data Instrument Library, an example of an electronic data collection library, continues to grow both in terms of volume and diversity. Development of coding and naming guidelines, and links to external sources has streamlined the process. Future plans are to expand on the external library access to include a mechanism for consortium partners to create their own institutional repository.
References and Acknowledgements
Jihad S. Obeid, Catherine A. McGraw, Brenda L. Minor, José G. Conde, Robert Pawluk, Michael Lin, Janey Wang, Sean R. Banks, Sheree A. Hemphill, Rob Taylor, Paul A. Harris, Procurement of shared data instruments for Research Electronic Data Capture (REDCap), Journal of Biomedical Informatics, Available online 10 November 2012, ISSN , /j.jbi (
Introduction
REDCap’s shared electronic library known as the Shared Data Instruments Library (SDIL) benefits the research community in a number of ways:
The library oversight committee (REDLOC) saves researchers time otherwise required to create quality instruments for a REDCap project by providing a curated set of validated, often utilized instruments, approved for public domain use and reconfigured into the REDCap format.
The library fosters data sharing by providing instruments created with standardized naming convention and formatting, enhancing cross study and multisite collaboration.
The library allows sharing of non-curated instruments, referred to as “bottom up submissions”, submitted by researchers and requiring a less rigorous review process. These can be shared within an institution or the consortium at large.
Library Development and Usage
Shared Data Instrument Library (SDIL)
929 instruments in the library
440 “standardized” instruments created by REDLOC Committee
Public Use
Validated instruments
Established development guidelines, e.g. naming convention
b) 323 “bottom-up” instruments
Submitted by end-users
No formal validation process by REDLOC Committee
2) End-users can search through list of instruments by keywords
3) Forms immediately ready for import into user’s REDCap project
4) External libraries - Data collection instruments from these libraries may be downloaded and uploaded into REDCap as an instrument ZIP file.
Shared Library Floor Plan
CAT Instruments
CAT (Computer Adaptive Test) instruments are tailored questions based on responses. Examples of these instruments include the PROMIS-Neuro QOL CAT. The library was determined to be the best mechanism for delivering a collection of PROMIS® Adaptive surveys. These surveys are consistent with the criteria applied by REDLOC but are not under its oversight.
External Local
With the expansion of the REDCap library’s functionality comes the possibility for an institution to create a customized library for its own community.
Standardized Instruments
Instruments are verified by the REDLOC committee for:
public domain
access
research relevance
evidence of validation
coding compatibility
The instruments are built using established naming and coding conventions and can be imported into REDCap projects from the SDIL.
Bottom-up Consortium Wide Access
Instruments are submitted for use for the entire consortium and are available for viewing and downloading through on-line designer. These instruments are not viewable on projectredcap.org.
External Shared
The external shared library repository includes Medical Data Models and PhenX Toolkit. Data collection instruments from these libraries may be downloaded and uploaded into REDCap as an instrument ZIP file.
Bottom-up Local Access Only
Instruments are submitted for use by local institutions only. These instruments are not viewable on projectredcap.org and will only be visible by the home institution. 1