Project Summary

Despite the growing importance of patient-centered outcomes research (PCOR), as well as increased demand for the patient perspective in research, device, and drug development, growth in kidney disease research has been limited. A number of projects funded by the Patient-Centered Outcomes Research Institute, including the National Kidney Foundation’s Patient-Centered Outcomes Research Stakeholders’ Conference, have identified the barriers and challenges to patient-directed kidney disease research, which include a lack of knowledge among patients and researchers about how to best engage as partners in research. The National Kidney Foundation’s Kidney Research Connect aims to build kidney community members’ ability to engage as partners in PCOR by improving the knowledge of the research process among researchers, patients, and other stakeholders, as well as build an infrastructure that connects patients, family members, and researchers for collaboration. The project’s objectives and activities are the following: (1) to train a minimum of 200 kidney stakeholders, with at least 50% representing patients, family members, and caregivers, on the research process best practices for partnering on research via webinars and in-person community training workshops; and (2) to create a patient-friendly website (online platform) that will serve as a hub for kidney PCOR, including information on completed PCOR studies, training resources, and materials, as well as facilitate connections for research collaboration and partnerships. In the long term, this project will be a significant contribution to increasing the quantity and quality of kidney-focused PCOR projects that seek to answer questions most important to patients and those who care for them, as well as serve as a communication channel to support the dissemination of PCORI-funded kidney study results. This project will also produce sustainable products that will support the growth of a research-ready kidney community. A key deliverable of this project is the online platform, publicly accessible across the country, for researchers and patients to connect and partner throughout the research process, from study design to dissemination. The online platform will also host other tangible outputs, including the enduring training video on PCOR and patient engagement through the research process, and the Partners in Kidney Disease Research Guide - a collection of existing and newly developed tools and resources, for researchers, patients, family members, and caregivers to support engaging as true partners in research. 

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Project Information

Silvia Ferre
National Kidney Foundation
$249,537

Key Dates

24 months
2019

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Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 10, 2022