What is Patient-Centered Research? How do Patient Advisor Activities Fit Into CERTAIN?

The United States spends more money on healthcare than any other industrialized nation. And yet, in list after list, American healthcare is ranked at the bottom in measures of delivering safe, effective, and affordable care. Additionally, despite the huge amounts of money spent each year, most healthcare research is not effective in helping patients get better healthcare, because the system does not have a way to hear from patients and their doctors what information is important to have when making decisions about healthcare and treatment. CERTAIN is a program that helps doctors provide the care that patients need and helps patients be empowered and educated when making decisions about healthcare. CERTAIN talks to patients about the care they have received and gives that information back to patients and their doctors to inform discussions about healthcare decisions to improve the care received and outcomes experienced. CERTAIN actively works to include a wide range of voices and perspectives in all aspects of the research process – from development, to implementation, to dissemination and translation of study results.

The CERTAIN Patient Advisory Network is critical to the CERTAIN mission of ensuring that research aligns with issues important to patients and their caregivers. In particular, Patient Advisors help guide research teams to focus on the questions important to patients about their health, the important outcomes considered when making decisions, and how health and medical information is accessed and used. By sharing personal experiences with a specific health condition or healthcare delivery, Patient Advisors help research teams refine and improve research questions and study designs, including how study results are shared with the patient community and care providers.

CERTAIN Patient Advisors can get involved in a number of ways. Our Patient Advisory Board meets quarterly to provide input on our research programs and our approaches for supporting and involving patients as collaborators in our work. Patient research partners serve as members or consultants on specific research projects working directly with the research team throughout the life of the project – from selecting the research question to communicating the results. In addition to these activities, CERTAIN Patient Advisory Network members review research materials including patient surveys and research summaries for content and clarity as well as serve as speakers at CERTAIN events. The insight and passion Patient Advisors contribute to our work is greatly valued and critical to our continued commitment to improve healthcare in Washington State!

Author: CERTAIN Patient Advisory Network

The CERTAIN Patient Advisory Network seeks to improve research by providing a way for patients to work in collaboration with researchers throughout the research process — from the identification of research questions to the communication of the results.

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