Patient and Researcher Engagement in Health Research: A Parent’s Perspective

There is a growing body of evidence in support of more active engagement of patients in health research, beyond the traditional role of a subject or participant, which has led to the realization that their perspectives are a critical component of effective health research.1,2 This importance has recently been acknowledged in a number of countries, including the United Kingdom, the United States, and Canada. For example, the Canadian Institutes of Health Research has established the Strategy for Patient-Oriented Research, a coalition of federal, provincial, and territorial partners all dedicated to supporting researchers in integrating patients into all phases of research to better inform practice for improved patient outcomes. The partners include a mix of stakeholders, such as patients (ie, parents, caregivers, family, and public members), researchers, health professionals, and policy makers, among others. Patient-oriented research is defined in the Strategy for Patient-Oriented Research initiative as a continuum of research conducted by multidisciplinary teams who engage patients as partners, focus on patient-identified priorities, and improve patient outcomes through knowledge translation into practice.3–5 Patient and researcher engagement occurs when patients meaningfully and actively engage in governance, priority setting, and the conduct of research for mutual benefit.3 The Electronic Medical Record (EMR) Letters Study provides an example of such a partnership, in which parents are involved in an advisory capacity on the research team. The purpose of the EMR Letters Study is to examine parents’ perceptions about a letter received at the end of their visit with a pediatric pulmonologist. The letter provides a summary of … Address correspondence to Israel Amirav, MD, 4-527 Edmonton Clinic Health Academy, 11405 87 Ave, Edmonton, Alberta T6G 1C9, Canada. E-mail: amirav{at}ualberta.ca