At the heart of this proposal is an ambition to extend current UCSF IT research tools to handle the complexity encountered in developing a community-based research protocol.
B. Description of project
Community-based clinical research presents a novel set of challenges not addressed by current IT solutions at UCSF. Clinicians off-site must provide quality care while the resources to maintain and make meaning of the data exist at the hospital. In the community-based arm of the Child Trauma Research Program (CTRP) we have encountered the following challenges, (a) a research design where patients receive multiple forms of treatments at varying time points throughout the program; and (b) a lack of transparency in communication between researchers at SFGH who strive to maintain data integrity and clinicians out in the community that face obstacles such as lag time in scoring measures.
Extend UCSF-supported REDCap (Research Electronic Data Capture) software database to include additional features tailored to community-based longitudinal research designs. The proposed features will improve data quality by supporting clinicians in adhering to the study design:
- Add a dynamic feedback feature directly onto both measures and tracking forms that notifies clinicians of their progress
- Integrate the UCSF Library Wiki into the REDcap software to make the research protocol easily accessible to the clinicians in the community
- Serves as a training tool for future clinicians and research staff
- Program an automated “completeness” feature so that data quality is accurately reflected in the database. This feature builds upon REDCap’s excisting strengths of eliminating errors such as out of range data points, missing data points, and other types of invalid answers that typically occur when data is collected using traditional paper measures[i]
- Five 3-minute screencasts to showcase these new features to the UCSF community
D. Impact UCSF's mission and/or community
The integration and extension of the REDCap software database will further UCSF’s mission to be a leader in patient-centered care and research targeting local, regional, and global communities. Furthermore, this solution will help bring treatment to an underserved minority population and support UCSF's efforts in eliminating health disparities.
The community-based arm of CTRP consists of four agencies in the SF Bay Area with seven clinicians and 200 clients in total per year. This software extension will at first reach this population but will then serve as a proven template for all community-based research designs at UCSF. This is centrally supported by the publication of screencasts. By implementing and improving the REDCap software in community research we hope to open communication pathways with other research labs at UCSF and within the medical and academic communities at-large.
E. List of team members and their roles
- Esben Baek, UCSF Research Specialist, Project Lead (70% effort)
- Arianna Gard, UCSF Research Associate, Content Creation (70% effort)
- Miriam Hernandez Dimmler, UCSF Psychiatry Assistant Clinical Professor, Visionary (15% effort)
- Alicia F. Lieberman, Irving B. Harris Endowed Chair in Infant Mental Health; Vice Chair, Academic Affairs; Director, Child Trauma Research Program, Visionary and Subject Matter Expert (10% effort)
- TBD - IT Programming Specialist-Consultation (15% effort)
F. Project Milestones
- Week 1: Finalize project plan and confirm with IT Programming Specialist
- Week 2: Development of prototype measures and feature “plug-ins”
- Week 3: Integration of additional feature “plug-ins”
- Week 4: Continued development of measures and forms (e.g. CBCL, PSI)
- Week 5: Testing and feedback from users
- Week 6: Integrating feedback from users
- Week 7: Final implementation
[i] Colfer, A., Brodecki, D., Hutchins, L., Stellar, J.J. & Davis, K.F. (2011) Technology Supporting Research and Quality Improvement: A Success Story. Journal of Pediatric Nursing, 26(6), 595--596,
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