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

2. 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

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

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

5. 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

6. Identify Study Participants

7. Prepare and tag contact list

8. REDCap registration

9. Survey Ontology Mapping

10. Staff-assisted survey

11. Web-enabled survey (1)

12. Web-enabled survey (2)

13. Voice-enabled survey (1)

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

15. Voice-enabled survey (3)

16. Survey submission: Configuration

17. Survey submission: Configuration

18. Survey submission: Configuration

19. Survey submission: (Too much information)

20. Survey submission: Complete

21. 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

22. References I2b2: https://www.i2b2.org/
SHRINE:
SCILHS:
mySCILHS: (Source code will be open sourced soon)
CHIP:

23. Backups

24. Modification: isolating sensitive data