Multimodal Collection of Patient Reported Outcomes: mySCILHS

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Presentation transcript:

Multimodal Collection of Patient Reported Outcomes: mySCILHS Stanley Boykin Computational Health Informatics Program (CHIP) Boston Children’s Hospital

Scalable Collaborative Infrastructure for a Learning Health System (SCILHS) Open-source clinical research data network 13 participating health care centers nationwide Enables clinical, patient research participation

SCILHS Research Cycle Leverage the network for feasibility studies Engage patients for initial and follow-up studies Analyze collected data and evaluate hypotheses

mySCILHS Scalable implementation to contact patients and collect reported outcomes Utilizes REDCap to engage patients, provide gateway to mutlimodal patient outcome reporting into i2b2

mySCILHS Components Contact Information Mapper – tag participating patient contacts with a system ID Survey Manager: REDCap project registration, question-to-ontology mapping I2b2 Loader – upload patient-reported outcomes (or PROs) to i2b2 Cloud IVR service – manages and implements interactive voice response

Identify Study Participants

Prepare and tag contact list

REDCap registration

Survey Ontology Mapping

Staff-assisted survey

Web-enabled survey (1)

Web-enabled survey (2)

Voice-enabled survey (1)

Voice-enabled survey (2) (1) “Verify this session” (2) (Verify patient and consent)

Voice-enabled survey (3)

Survey submission: Configuration

Survey submission: Configuration

Survey submission: Configuration

Survey submission: (Too much information)

Survey submission: Complete

Contributors Stanley Boykin, Marc Natter, MD, Ken Mandl, MD Boston Children’s Hospital Jessica Lyons, Sarah Weiler, Shawn Murphy, MD Harvard Medical School Bill Adams, MD Boston University School of Medicine

References I2b2: https://www.i2b2.org/ SHRINE: https://open.med.harvard.edu/project/shrine/ SCILHS: http://www.scilhs.org mySCILHS: (Source code will be open sourced soon) CHIP: http://www.chip.org

Backups

Modification: isolating sensitive data