Project Summary

The American Association of Kidney Patients (AAKP) National Patient Meeting – Patient-Centered Outcomes Research (PCOR) Track is designed to specifically address the ongoing problem of an overall lack of patient awareness and involvement in the design of clinical interventions and research in the kidney space. This problem is further complicated by the fact that the clinical outcomes chosen by most clinicians are often not the outcomes most important to the patients. If change is to truly occur, patients must be more substantively engaged in the design of innovative strategies and in the dissemination of the results of the research.

AAKP conducts the largest annual kidney patient meeting in the United States. Its 2019 National Patient Meeting is scheduled to take place on September 6-8 in Washington, DC. AAKP enlists the expertise and insights of a planning committee, comprising kidney patients, care partners, and clinicians when outlining the educational tracks. This meeting will feature a PCOR track designed to educate patients on: how to get involved in efforts to include patients in the implementation and design of clinical interventions and research that affect them; how to communicate what outcomes are most important to them; how they want the information regarding clinical care options conveyed to patients; and the fundamentally important role and power patients have in influencing/educating other kidney patients via peer-to-peer communications to help disseminate the information they have received.

The AAKP PCOR track will arm patients with the tools needed to become empowered to seek opportunities for involvement at all levels of research design, implementation, and participation.

It is the project team’s belief that the purpose of research is to benefit patients and that patients are an often untapped yet integral part of the research process to ensure research informs the results that patients need. The team strongly believes solid research, coupled with widespread dissemination among patient advocates and policy makers, will impact future disease research and policy in a manner that is beneficial to all kidney patients—especially those who are the most vulnerable and underrepresented.

In addition to live attendees, select sessions will be streamed live and recorded for on-demand viewing. For more information about the conference or to attend, visit 

Project Information

Diana Clynes, BA
American Association of Kidney Patients

Key Dates

12 months


Project Status
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Last updated: November 30, 2022