Register for the upcomingCanadian Association of Research Administrators (CARA) webinar on February 25, 2020, titled Partnering with Patients in Health Research: What Lessons have we Learned?
There is growing interest in engaging patients and caregivers in healthcare research as partners and collaborators, as a way of enhancing the quality and relevance of research. Patient partners draw from their personal experiences and provide support with project development, oversight and dissemination of results. Some examples include: advising on important study outcomes, providing insight into developing patient-friendly learning tools, and acting as research advocates, among many others. Furthermore, funding agencies (i.e. CIHR) are increasingly encouraging patient engagement in research. This is prompting institutions to adapt their practices and develop guidelines for patient engagement in research to ensure the process is mutually beneficial and complies with institutional regulations. This webinar will give an overview of our journey in developing, implementing and improving patient engagement in research including some of the challenges that inevitably arose. We will also delve into more specific topics including training requirements, safety, privacy, compensation and risk related to engaging patients in research.
Macarena Pampillo, PhD., is a research officer at Lawson Health Research Institute and helps Maria develop the patient engagement initiative. She also facilitates Lawson’s internal funding competitions, which are some of the opportunities where Lawson has engaged patient partners in research.
Maria Ramey, PhD., is currently a research officer at Lawson Health Research Institute, where she assists researchers in applying for various research funding opportunities. She is also the Lawson Patient Partner Representative and has been developing the framework for Patient Engagement in Research for the past 2 years. By working together with the institution’s finance, safety, communications, human resources, and contracts teams, as well as the hospital Patient Councils, she has developed documentation, training and guidelines for engaging patient partners in a variety of research roles, from reviewing research proposals to partnering with researchers in their clinical studies.