Early results of a pancreas cancer learning health network: Canopy Cancer Collective.
Authors: Herman Joseph M. , Alyesh Abigail Zier , Korah Bobby , Narang Amol , Deperalta Danielle , Lowy Andrew M. , Ejaz Aslam , Tempero Margaret A. , Fisher George A. , Coveler Andrew L. , Aguilera Todd Anthony , Goodman Karyn A. , Donahue Timothy R. , Leal Alexis Diane , Malik Nadia , Giles Kurt , Roberts Hannah Johnson , Hoffe Sarah E. , Hoos William Arthur , Stricker Carrie Tompkins 
Published: January 2024

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Background: Pancreas cancer (PC) is the third leading cause of cancer death in the United States. Canopy Cancer Collective (CCC) was founded in 2019 given the urgent need for improvements in survival and patient experience. Through interdisciplinary teams inclusive of patients, 14 care centers formed a learning health network (LHN) to share data and best practices to accelerate improvements in PC care delivery and outcomes. Methods: In October 2022, LHN representatives gathered to establish aims for the year. Through a consensus process, the LHN arrived at four aims to achieve by December 31, 2023. The aims are: Patients screened for 1) clinical trials will increase from 39% to 100%, 2) palliative care will increase from 30% to 100%, 3) enzyme need will increase from 37% to 100%, and 4) goals of care assessed will increase from 57% to 100% . CCC established measures to guide improvement toward the aims, which are tracked using a registry. Sites co-developed operational definitions for each measure and implemented new practices to identify and manage all patients with pancreas adenocarcinoma who enter their care. For each aim, each care center identified their current processes for screening, documented their desired future processes, tested changes to close gaps, and standardized successful changes. Many began with a subset of their population, or in a single clinic, and are working to expand to additional populations and settings. CCC facilitates best practice sharing among LHN peers and data sharing. Care centers have had access to the following supports: 1) quality improvement coaching, 2) topical workgroups, 3) peer workgroups, 4) network-wide webinars, 5) summaries of best practices to adapt locally, 6) data at site and network levels, and 7) a community platform for documentation and collaboration. Results: There are 2,443 patients in the CCC registry. All sites report data on patients discussed in pancreas clinic or tumor board and are working to include their full PC population. Data analyzed using Shewhart control charts (p-charts) show improvement at an aggregate level across all aims. A January 2021-December 2022 baseline includes 1,218 patients. Care centers began testing changes in January 2023, and 1,225 patients have been included since. The percent of patients screened for clinical trials, enzyme need, and palliative care has shifted above the upper control limits for at least six months. The percent of patients with goals of care assessed shifted above the upper control limit for five months. Just one data point outside the upper control limit (UCL) signifies non-random variation. Conclusions: These aims put our 14 care centers on a path to delivering measurably improved care for patients through better access to nutrition, clinical trials, and palliative and supportive care services. A LHN is a model of collaboration and community building that can successfully transform care delivery at scale for patients with PC.