Project Summary

Background: Patient advocacy organizations are uniquely situated to disseminate information because of their strong established connection with healthcare stakeholder groups, notably patient populations. The translation gap between research publication and uptake of recommended new health information by patient populations occurs in part due to ineffective dissemination. Moreover, resources for dissemination fail to offer a step-by-step guide that patient advocacy organizations can follow to optimally disseminate research findings to their patient communities using social media and novel technologies.

Proposed Solution to the Problem: The project team will work with patients and other stakeholders to build capacity and outline a process for patient advocacy organizations to effectively disseminate research findings to patient communities, with the use case of disseminating existing patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) in wellness for adults living with inflammatory arthritis. The team will adapt and elaborate on the PCORI Dissemination and Implementation Toolkit to develop and pilot test a step-by-step process that patient advocacy organizations can use for disseminating evidence-based health information to patient populations.   

Objectives: A playbook will be available for patient advocacy organizations to use as an instruction guide that contains real-life examples of dissemination planning, implementation, and feedback to suit the unique requirements of patient advocacy organizations as they apply promising practices in their own dissemination processes. 

The playbook will include strategies, resources, and tools on how to select information for dissemination, identify priority audiences, and tailor and align population-specific requirements for information with successful ways to share this information. 

Activities: To develop the playbook and provide examples, the team is applying principles from the toolkit and implementing a use case, namely dissemination of science-based information on wellness for people with inflammatory arthritis. This will demonstrate how the capacity built with the playbook can be operationalized to disseminate evidence-based information on PCOR/CER topics in the future, which can then be used by other stakeholders, specifically other patient advocacy organizations.

Projected Outcomes and Outputs: 

In the short term, through this project, the project team will develop and receive feedback on dissemination of evidence-based wellness approaches to health management of patients with inflammatory arthritis. 

In the medium term (zero-two years post project period), the team will share these learnings with stakeholders and media outlets, while gathering information from stakeholders regarding dissemination practices. A medium-term outcome also includes the development of a playbook, which can be used as an instruction guide that contains real-life examples of dissemination planning, implementation, and feedback to suit the unique requirements of patient advocacy organizations as they apply promising practices in their own dissemination processes.

In the long term, the modular playbook will be made available online for patient advocacy organizations wishing to follow a roadmap for how to disseminate findings from PCOR/CER, particularly as they relate to nonpharmacological approaches to disease management.

Patient and Stakeholder Engagement Plan: Patients will primarily be engaged through CreakyJoints®, a network of people living with arthritis. CreakyJoints® provides information, support, advocacy, and research opportunities to its members online and at in-person events. Stakeholders will also include representation from clinicians, researchers, physical therapists, and mental health professionals to serve on a technical advisory board and a patient advisory board. The roles of technical advisor and patient advisor will include informing the development of project materials, attending stakeholder online meetings, and advising on disseminating existing PCOR/CER in wellness for adults living with inflammatory arthritis. Patient advisors will also provide insights about their experiences with inflammatory arthritis including hurdles and facilitators in accessing evidence-based health information, particularly around wellness. 

Project Collaborators: Due to the combination of CreakyJoint’s nationwide education, advocacy efforts, and partnerships with healthcare systems, physicians, and leading researchers, the project team is well positioned to collaborate with stakeholders in health care that include clinicians, researchers, mental health professionals, physical therapists, and health communication specialists. The team will invite representatives from these stakeholder groups to participate in the project.

Project Information

Shilpa Venkatachalam, MA, MPH, PhD
Global Healthy Living Foundation

Key Dates

24 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: February 3, 2023