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

doi:10.1016/j.jcf.2020.03.009

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

J Cyst Fibros. 2020 Sep;19(5):768-776. doi: 10.1016/j.jcf.2020.03.009. Epub 2020 Apr 27.

Authors

Aricca D Van Citters¹, Alex H Gifford², Cynthia Brady³, Jordan M Dunitz⁴, Madeline Elmhirst⁵, Jonathan Flath⁵, Terri A Laguna⁶, Brooke Moore³, Michelle L Prickett⁷, Maureen Riordan⁸, Adrienne P Savant⁹, Whitney Gore¹⁰, Sarah Jian¹¹, Morgan Soper¹², Bruce C Marshall¹³, Eugene C Nelson¹, Kathryn A Sabadosa¹⁴

Affiliations

¹ The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Williamson Translational Research Building, Level 5, One Medical Center Drive, Lebanon, NH 03766, USA.
² The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Williamson Translational Research Building, Level 5, One Medical Center Drive, Lebanon, NH 03766, USA; Dartmouth Hitchcock Medical Center, One Medical Center Drive, Lebanon, NH 03766, USA.
³ Children's Minnesota, 2525 Chicago Avenue S, Minneapolis, MN 55404, USA; Children's Respiratory and Critical Care Specialists, 2530 Chicago Avenue S, Suite 400, Minneapolis, MN 55404, USA.
⁴ Division of Pulmonary, Allergy, Critical Care and Sleep Medicine; Department of Medicine; University of Minnesota; 420 Delaware Street SE, MMC 276; Minneapolis, MN 55455, USA.
⁵ Patient partner, Minneapolis, MN, USA.
⁶ University of Minnesota Masonic Children's Hospital; 2450 Riverside Avenue, Minneapolis, MN 55454, USA.
⁷ Northwestern University, Feinberg School of Medicine, 676 N Saint Clair Street, Suite 1400, Chicago, IL 60611, USA.
⁸ Parent partner; Chicago, IL, USA.
⁹ Northwestern University, Feinberg School of Medicine, 676 N Saint Clair Street, Suite 1400, Chicago, IL 60611, USA; Ann & Robert H. Lurie Children's Hospital of Chicago; 225 E Chicago Avenue; Chicago, IL 60611, USA.
¹⁰ Children's Hospital Los Angeles, 4650 West Sunset Boulevard, Los Angeles, CA 90026, USA.
¹¹ UT Southwestern Cystic Fibrosis Clinic, 5939 Harry Hines Boulevard; POB 2, Suite 334, Dallas, TX 75390, USA.
¹² University of Virginia Medical Center, 1221 Lee Street, Charlottesville, VA 22908, USA.
¹³ Cystic Fibrosis Foundation, 4550 Montgomery Avenue, Suite 1100N, Bethesda, MD 20814, USA.
¹⁴ The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Williamson Translational Research Building, Level 5, One Medical Center Drive, Lebanon, NH 03766, USA. Electronic address: ksabadosa@cff.org.

PMID: 32354650
DOI: 10.1016/j.jcf.2020.03.009

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.

Keywords: Co-design; Coproduction; Cystic fibrosis; Dashboard; Patient-clinician partnerships; Registry.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Attitude of Health Personnel
Child
Communication*
Cystic Fibrosis / therapy*
Humans
Patient Generated Health Data*
Patient Participation*
Physician-Patient Relations*
Pilot Projects
Surveys and Questionnaires
Young Adult