Project Summary

Background: Despite patients’ enthusiasm, researchers often find it difficult to recruit and integrate patients into CER/PCOR, especially those from diverse and/or underserved communities. This challenge is compounded by the rapid nature of COVID-19 research funding, where projects are often developed and submitted on an accelerated cycle.

Proposed Solution to the Problem: Build a learning community of patients, caregivers, and researchers—connecting these stakeholders in person-centered, engaging, and interactive workshops. These workshops will include communication skills and team building training that expands engagement capacity for all stakeholders. Activities will facilitate co-learning, including opportunities for real-time networking and matchmaking between research teams/projects and potential patient advisors, and train a cohort of patients, readying them to engage specifically around COVID-19-related topics and projects.

Objectives:  (a) Prepare a diverse cohort of underserved patients with relevant COVID-19 experiences, a “COVID Cohort,” to inform, advise, and/or partner on research projects; (b) build a COVID Learning Community to facilitate connections between members of this patient group and the research community for co-learning opportunities and matchmaking for specific CER/PCOR projects.

Activities: Leverage existing relationships to build a COVID Learning Community, support targeted patient training in the areas of CER/PCOR and COVID-19, and facilitate patient-researcher convenings focused on co-learning, skills building, and building connections among stakeholders. Additional activities include holding PCOR sessions at the project team’s annual patient-focused conference, engaging the Learning Community in COVID-19 outcomes prioritization, and adapting existing CER/PCOR trainings to the needs of the community.

Projected Outcomes and Outputs: Primary outcomes: (a) establishing a cohort of diverse, underserved, low-resourced patients that are research-ready and can efficiently, effectively, and confidently engage on COVID-19 and related studies, and (b) connecting these patients with researchers in learning community activities that will offer patients and researchers opportunities for hands-on skills building, networking, and recruitment of patients into their research teams. Once achieved, this will be impactful by giving patients and researchers the support necessary to quickly and successfully recruit and integrate patients into COVID-19 CER/PCOR research projects, ensuring that these projects have a diverse perspective that is critical for addressing health disparities and issues of equity.

Patient and Stakeholder Engagement Plan: There are opportunities for stakeholders to co-develop both the content and process of the training and Learning Community activities. This project is designed, and will be implemented, in a patient-driven and stakeholder-centered manner. Two patient partners have been engaged throughout the proposal development process. These individuals will serve in a leadership capacity as patient co-leads throughout the project, working side by side with the PAF project lead on all aspects of the project. In addition, a multi-stakeholder advisory committee will be established. This is a subgroup of the Learning Community that have committed to participating in all activities and providing expertise to trainings and stakeholder convenings. Co-led by the project patient partners, this group will be a mix of academic researchers, clinic-based researchers, patients, and caregivers.

Project Information

Rebekah Angove, PhD
Patient Advocate Foundation
$195,711

Key Dates

18 months
2021

Tags

Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022