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Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned

  • Briana L. Rigau (a1), Elizabeth A. Scully (a2), Jodi K. Dooling-Litfin (a2), Natalie J. Murphy (a3), Beth M. McManus (a4) and Mary A. Khetani (a5)...

Abstract

Background

Electronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation.

Methods

This second pilot study involved families enrolled in a large EI program (n=1040 families) in concert with their implementation of a statewide quality improvement initiative for care plan development and outcomes reporting. A total of 22 EI service coordinators and supervisors were engaged in 3 phases: initial e-PRO intervention, peer-mentor enhancement, and standard recruitment protocol.

Results

Implementation of the e-PRO intervention and peer-mentoring enhancement yielded low enrollment rates over the first 6 months (n=17). A standard recruitment protocol has resulted in enrollment growth (n=83) towards the targeted enrollment rate (n=832).

Conclusions

This study reports on early insights for building and sustaining a productive academic-community partnership for e-PRO implementation to support family-centered coordinated care. Lessons learned from this academic-community partnership with respect to strategies for enhancing community significance, collaboration, return, and control are discussed as they inform further development of this intervention before scale-up.

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Copyright

This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike licence (http://creativecommons.org/licenses/by-nc-sa/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the same Creative Commons licence is included and the original work is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use.

Corresponding author

*Address for correspondence: M. Khetani, Sc.D., OTR/L, Department of Occupational Therapy, University of Illinois at Chicago (UIC), 1919 West Taylor Street, Room 316 A, Chicago, IL 60612-7250, USA. (Email: mkhetani@uic.edu)

Footnotes

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Co-first authors, listed alphabetically.

Co-senior author.

Footnotes

References

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Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned

  • Briana L. Rigau (a1), Elizabeth A. Scully (a2), Jodi K. Dooling-Litfin (a2), Natalie J. Murphy (a3), Beth M. McManus (a4) and Mary A. Khetani (a5)...

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