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 language | English (US) |
|---|---|
| Pages (from-to) | 768-776 |
| Number of pages | 9 |
| Journal | Journal of Cystic Fibrosis |
| Volume | 19 |
| Issue number | 5 |
| DOIs | |
| State | Published - Sep 2020 |
Bibliographical note
Funding Information:This work was supported by the Robert Wood Johnson Foundation (Grants # 71211 , # 72313 , # 75925 ) and Cystic Fibrosis Foundation (Grants OCONNO04Q10 , GIFFOR17Y5 ). The Cystic Fibrosis Foundation played an active role in selecting the IT partner (Get Real Health ®) and funded that aspect of the work, but did not influence development of the actual prototype dashboard developed in collaboration with PwCF and clinicians. Registry integration was supported by the data team at the Cystic Fibrosis Foundation (Alex Elbert, Tom O'Neil, and Samar Rizvi, Azeb Gedamu). Katherine Titus, Emily Morgan, Amanda Hoggard, and Karen Homa participated in the collection or coding of qualitative data. The authors would like to thank the Cystic Fibrosis Foundation for the use of CF Foundation Patient Registry data to conduct this study. Additionally, we would like to thank the patients, care providers, and clinic coordinators at CF Centres throughout the United States for their contributions to the CF Foundation Patient Registry, and to the initial design of the dashboard. We also thank the clinicians, patients and families from the CF programmes at the University of Minnesota, Children's Minnesota, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University, UT Southwestern, University of Virginia, and Children's Hospital of Los Angeles.
Funding Information:
Jordan Dunitz, Adrienne Savant, Brooke Moore, Michelle Prickett, Terri Laguna, Cindy Brady, Morgan Soper, Sarah Jain, and Whitney Gore report grant subcontracts from Dartmouth College to conduct work associated with design and pilot-testing of CFHC. Eugene Nelson, Kathryn Sabadosa, and Aricca Van Citters report grant funding from the Robert Wood Johnson Foundation and Cystic Fibrosis Foundation. Alex Gifford reports grant funding from the Cystic Fibrosis Foundation. Terri Laguna reports grant funding from the Cystic Fibrosis Foundation and the National Institutes of Health, is a grant reviewer for the Cystic Fibrosis Foundation and a member of a National Institute of Health study section; and receives an honorarium for participating on a Physician Advisory Board for Vertex Pharmaceuticals. Eugene Nelson owns stock in Quality Data Management (QDM). Bruce Marshall, Jonathan Flath, Madeline Elmhirst, and Maureen Riordan report no conflicts of interest.
Funding Information:
This work was supported by the Robert Wood Johnson Foundation (Grants #71211, #72313, #75925) and Cystic Fibrosis Foundation (Grants OCONNO04Q10, GIFFOR17Y5). The Cystic Fibrosis Foundation played an active role in selecting the IT partner (Get Real Health ®) and funded that aspect of the work, but did not influence development of the actual prototype dashboard developed in collaboration with PwCF and clinicians. Registry integration was supported by the data team at the Cystic Fibrosis Foundation (Alex Elbert, Tom O'Neil, and Samar Rizvi, Azeb Gedamu). Katherine Titus, Emily Morgan, Amanda Hoggard, and Karen Homa participated in the collection or coding of qualitative data. The authors would like to thank the Cystic Fibrosis Foundation for the use of CF Foundation Patient Registry data to conduct this study. Additionally, we would like to thank the patients, care providers, and clinic coordinators at CF Centres throughout the United States for their contributions to the CF Foundation Patient Registry, and to the initial design of the dashboard. We also thank the clinicians, patients and families from the CF programmes at the University of Minnesota, Children's Minnesota, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University, UT Southwestern, University of Virginia, and Children's Hospital of Los Angeles.
Publisher Copyright:
© 2020
Keywords
- Co-design
- Coproduction
- Cystic fibrosis
- Dashboard
- Patient-clinician partnerships
- Registry
