The PROKids team has considerable expertise in leveraging stakeholder perspectives to optimize patient-centered outcomes research (PCOR). Through her own research program as well as consultation for numerous other projects, Dr. Cox and the PROKids team have developed extensive knowledge and skills to integrate the diverse perspectives of patients, caregivers, and healthcare professionals throughout the research trajectory. Engaging stakeholders is critical for creating the buy-in and motivation needed to implement, evaluate, and disseminate PCOR in complex systems such as our healthcare system. For instance, Project ACE, a PCORI-funded trial evaluating a family-centered intervention for children with type 1 diabetes, has extensively utilized the input from stakeholder advisory boards. For this work, stakeholders from many different groups (e.g., parents, youth/teen patients, administrators, providers, and advocates) from Madison and Milwaukee have guided and shaped all phases of the research, from the preparatory phase through execution, and now into translation.
Training Resources for Researchers
The stakeholder engagement processes developed and employed by PROKids have been showcased as a model for others at numerous meetings and media events. To enable other researchers to benefit from our experience, PROKids will offer two workshops as part of the ICTR-CAP training program for PCOR. Both workshops are aimed especially at early-career researchers and those new to patient-centered outcomes research, including those who have conducted other types of research previously. In collaboration with the Sonderegger Center, “Sustaining Engagement of Blended Stakeholder Boards Across the PCOR Trajectory” will guide attendees through the process of drafting a compelling plan for meaningfully engaging stakeholders across the lifecycle of a research project. The workshop is a two-part series, with the initial workshop focusing on identifying and recruiting stakeholders as advisors and the second workshop focused on developing agendas and effective activities for engaging stakeholders.
Toolkit Development for Dissemination
Key to securing extramural funding and maximizing impact, a final step in PCOR is the development of a well-thought out dissemination plan for the new knowledge gained from research. Throughout their work, PROKids has consistently written dissemination plans that have won accolades from reviewers and funding agencies and are then put into practice. Toolkits allow others to easily adapt new research findings and accelerate the translation of knowledge into clinical practice and new research projects. In this process, engagement of key stakeholders begins early on and continues to shape the products from the research, to maximize utility and make them ready to implement. For example, the Family-Centered Rounds Toolkit documents the development and implementation of a feasible and sustainable intervention to improve family engagement during family-centered rounds. Aimed at researchers, clinicians, and public health practitioners, the Toolkit on Patient Partner Engagement in Research provides a comprehensive set of orientation materials for engaging patient partners in research or implementation projects.