PCOR focuses on outcomes that are important to people, including patients and caregivers. No matter the type of research, people who may have lived experience with a disease or condition “have a seat at the table,” informing researchers about things that matter most to those affected by the disease. This can include deciding what research questions to explore or what side effects may be tolerable in order to have a new treatment option.

Anyone who is interested! Your participation will be as a member of the research team or advisory board, not as a research subject. Participation is voluntary although in some cases your efforts may be paid. Different studies focus on different things. Researchers may be interested in working with you based on your current or past experience with dialysis or transplant, the cause of your kidney disease, your age, gender, race, or other conditions. While not everyone will be the right fit for every project, there are many so don’t give up – continue to apply!

There are many ways people can be involved in PCOR. Patients and their lived experience have unique insight that is valuable to every stage and aspect of the research process. Early on, patients may be asked to participate in brainstorming what the research question should be. They may also be included in multi-stakeholder advisory boards to oversee the project’s development and execution. Patients may also participate in creating summaries of the research findings that are easy to understand for other patients and their families. These are just a few examples of how patients can be involved in PCOR.

Every research study must have an action plan (called a “protocol”). The protocol describes what will be done in the study, how it will be conducted, how long it will take, and why each part of the study is needed. NKF’s Kidney Research Connect website will help make this easy to access and understand.