Background: ImproveCareNow (ICN), is a Patient- Powered Research Network (PPRN) modeled after the National Academy of Medicine’s concept of a learning health system in which clinical care, improvement, and research are integrated into one system, and where patients and clinicians collaborate to coproduce information and knowledge to improve health care. ICN has made advances in patient-centered outcomes research (PCOR), but there are still gaps, including start-up delays and slow recruitment.
Proposed Solution to the Problem: The project team intends to create and test a model to improve PCOR by improving engagement, study start-up, and enrollment. The model can be adapted to work in a variety of contexts and scaled up and applied to the broader PCOR community, thereby increasing effectiveness and efficiency of PCOR.
- Accelerate PCOR by continuing to grow and align engagement of patients, clinicians, researchers, and health system leaders in driving research
- Enhance the network’s ability to execute the processes required to perform efficient and effective large-scale PCOR embedded in care
Activities: The project will:
- Adapt the design, tools, and change strategies for accelerating PCOR produced in collaboration with the Institute for Advanced Clinical Trials for Children (I-ACT) research improvement network to ICN care centers
- Determine how and in what contexts the ICN-specific change strategies can work or be amended to work to accelerate PCOR
- Test the change strategies for optimizing ongoing ICN PCOR studies in a group of 5-10 “Trailblazer” ICN centers that are also part of I-ACT and PEDSnet, a PCORnet Clinical Research network
Outcomes: Implementing these changes will result in improving: patient, family, and clinician engagement, as measured by increases in the percentage of IBD patients and GI physicians participating in research; the efficiency and effectiveness of key PCOR processes, as measured by time to study start-up and rate of study enrollment.
Patient and Stakeholder Engagement: Patients and key stakeholders will formulate the project’s questions and design, participating meaningfully in the project’s conduct and dissemination/implementation of results Patients and key stakeholders will serve on the project leadership team to participate in design meetings; consult on adaptation of I-ACT tools, measures, and resources to ICN; review data monthly; develop agendas for and chair leadership team calls (monthly); develop agendas for and chair monthly ICN Trailblazer team calls; and participate in I-ACT network meetings. They will also coach and mentor stakeholders on the Trailblazer teams on coproduction of research and improvement with other Trailblazer teams. This will ensure that the project’s questions and design, conduct, and dissemination of results are consistent with the needs and goals of patients and parent stakeholders.
Project Collaborators: I-ACT, Toyota Production System Support Center, PEDSnet.