The patient voice in research—evolution of a role

PLAIN ENGLISH SUMMARY: Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient’s perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research. ABSTRACT: Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient’s perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research.