Formative evaluation of a dashboard to support coproduction of healthcare services in cystic fibrosis

Aricca D. Van Citters, Alex H. Gifford, Cynthia Brady, Jordan M. Dunitz, Madeline Elmhirst, Jonathan Flath, Terri A. Laguna, Brooke Moore, Michelle L. Prickett, Maureen Riordan, Adrienne P. Savant, Whitney Gore, Sarah Jian, Morgan Soper, Bruce C. Marshall, Eugene C. Nelson, Kathryn A. Sabadosa*

*Corresponding author for this work

Research output: Contribution to journalArticle

Abstract

Background: Healthcare coproduction engages patients and clinicians to design and execute services, yet little is known about tools that facilitate coproduction. Our objective was to understand uptake, experiences, benefits, and limitations of a dashboard to support patient-clinician partnerships within the cystic fibrosis (CF) community. Methods: People living with CF (PwCF) and clinicians co-designed a dashboard that displayed patient-reported and clinical data. Eight CF programmes, including 21 clinicians, and 131 PwCF participated in a pilot study of the dashboard. We conducted descriptive statistics and thematic analyses of surveys (82 PwCF; 21 clinicians); semi-structured interviews (13 PwCF; 8 care teams); and passively-collected usage data. Results: Two-thirds of the 82 PwCF used the dashboard during a visit, and 59% used it outside a visit. Among 48 PwCF using the dashboard outside the clinic, 92% viewed their health information and 46% documented concerns or requests. Most of the 21 clinicians used the dashboard to support visit planning (76%); fewer used it during a visit (48%). The dashboard supported discussions of what matters most (69% PwCF; 68% clinicians). Several themes emerged: access to patient outcomes data allows users to learn more deeply; participation in pre-visit planning matters; coproduction is made possible by inviting new ways to partner; and lack of integration with existing information technology (IT) systems is limiting. Conclusions: A dashboard was feasible to implement and use. Future iterations should provide patients access to their data, be simple to use, and integrate with IT systems in use by clinicians and PwCF.

Original languageEnglish (US)
Pages (from-to)768-776
Number of pages9
JournalJournal of Cystic Fibrosis
Volume19
Issue number5
DOIs
StatePublished - Sep 2020

Keywords

  • Co-design
  • Coproduction
  • Cystic fibrosis
  • Dashboard
  • Patient-clinician partnerships
  • Registry

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Pulmonary and Respiratory Medicine

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  • Cite this

    Van Citters, A. D., Gifford, A. H., Brady, C., Dunitz, J. M., Elmhirst, M., Flath, J., Laguna, T. A., Moore, B., Prickett, M. L., Riordan, M., Savant, A. P., Gore, W., Jian, S., Soper, M., Marshall, B. C., Nelson, E. C., & Sabadosa, K. A. (2020). Formative evaluation of a dashboard to support coproduction of healthcare services in cystic fibrosis. Journal of Cystic Fibrosis, 19(5), 768-776. https://doi.org/10.1016/j.jcf.2020.03.009