The dashboard captures patient-generated health information and questions for clinicians; a summary of current health including pulmonary function, nutritional health and overall well-being; and a summary of next steps following a clinic visit and barriers to sustaining daily care.
The CF Foundation engaged Get Real Health to build the electronic version of the dashboard for testing. By combining real-time, patient-reported data with clinical data to create the dashboard, care teams and individuals with CF can focus on treatment decisions and support self-management. The Foundation will also use the dashboard data to enhance information in the CF Foundation's Patient Registry. In early 2017, care teams, adults with CF and families at five additional programs will be invited to test the dashboard.
This work will be featured at the 2016 NACFC:
- Poster #534, Coproducing CF Care: Rapid Tests of Change
- Presentation, Developing a Coproduction Dashboard Using Human-Centered Design, Friday, Oct. 28, 2:00 p.m. - 3:20 p.m., CLIN: Quality Improvement & Best Practices in Clinical Research
To learn more about the coproduction project, contact Kathy Sabadosa, M.P.H., at kathryn.a.sabadosa@dartmouth.edu.
Background: The Aims, Concept, Funding, Partners and Timing
Five CF programs will pilot the coproduction dashboard to demonstrate how the use of the dashboard by patients, families and clinical care teams during clinic visits can improve the quality, outcomes and value of care. The dashboard will include longitudinal and real-time clinical data; patient-generated health information, concerns and requests; a summary care plan; and the patient's reported health goals and barriers to sustaining daily care.
This pilot test is part of a larger conceptual model that shows how patient registries can support what the Institute of Medicine calls a “learning health system,” designed to improve care for individuals and patient populations, and serve as a platform for conducting outcomes and biomedical research. If successful, the pilot will expand to include additional programs, ultimately scaling to all 275 CF Foundation-accredited programs in the United States.
This project is jointly funded by The Dartmouth Institute with funds from the Robert Wood Johnson Foundation (RWJF) and by the CF Foundation. The RWJF aims to demonstrate a replicable model for improving outcomes and value that can be applied to any chronic disease population and rapidly deployed. The CF Foundation aims to design and implement a bi-directional information environment that improves the ability of clinicians and patients and families to coproduce CF care.
The five pilot sites are the pediatric and adult programs in Chicago (Ann & Robert H. Lurie Children's Hospital of Chicago/Northwestern) and two pediatric programs and an adult program in Minneapolis (University of Minnesota and Children's Hospitals and Clinics of Minnesota). These sites were selected on the basis of many criteria that make them excellent “test beds.” Each site has assembled a team of clinicians, patients and families and IT professionals to work on this project. Our team has met regularly with each site since August 2015 to co-design the coproduction dashboard and to explore the current clinical care delivery context, including the capture and use of patient-reported and clinical data using electronic medical record systems and the CF Foundation Patient Registry.
The pilot sites started testing a prototype of the coproduction dashboard in December 2015 and will continue until iterative, small-scale tests of an information technology solution begins.