Patient-oriented research: a comprehensive collection highlighting benefits, challenges, experiences and more Patient engagement in research can improve health, health system
OTTAWA, November 7, 2018 - Does engaging patients in research projects improve health? A comprehensive collection of 17 innovative demonstration projects — including two from researchers and patient partners at the CHEO Research Institute — highlights the value of patient engagement in research.
Engaging Patients in Health Research: the Ontario Experience, a special patient-oriented research supplement in CMAJ (Canadian Medical Association Journal), features in-the-trenches experiences, tips and challenges from 17 IMPACT projects funded by the Ontario SPOR SUPPORT Unit (OSSU). It is a resource for researchers and others interested in this growing approach that involves patients and caregivers as partners in health and health systems research.
"The innovative, collaborative approach of these projects underscores Ontario's role as a leader in putting patients first and in seeking ways to improve patient health and the way health care is delivered," says Dr. Adalsteinn Brown, Chair, OSSU's Board of Directors. "We expect that OSSU's IMPACT projects will live up to their name as they will impact the way we deliver health care, from emergency services to mental health, hip fracture care to heart failure care and more."
Lived experience of patients and caregivers can make health research more relevant to patient needs by focusing on patient-identified priorities, which can improve health and the health system.
CHEO Research Institute Examples:
- Parents and Clinicians working together in newborn pain management — Parents of a newborn want to do anything to reduce pain in their baby. The ONesiE study was designed to help parents get the right tools to reduce pain when their baby is getting their newborn screening. Having parent Yiyan Zhou be partner in this study, from the design and implementation to dissemination, was an interesting way to see the perspective of a parent in contributing to changing how pain management education is taught in Ontario.
- Approaches to involving patients in pediatric concussion research - The Pediatric Concussion Assessment of Rest and Exertion (PedCare) study has attempted to purposefully and meaningfully engage patiens and their families at all stages of the project.
In 2014, OSSU issued a call to fund translational research projects that aimed to conduct Innovative, Measurable, Patient-oriented, Appropriate, Collaborative and Transformative (IMPACT) research to improve patient health in Ontario. The complete list of 17 IMPACT projects in pediatrics, mental health, Indigenous health, chronic disease and health systems research is available here.
"Just as the patient experience in clinical care is important, so too is the patient perspective in research," says Dr. Diane Kelsall, editor-in-chief (interim), CMAJ. "Asking patients and families about what is important to them results in better research studies that address patient health priorities, which can benefit the health system. CMAJ sees patient-oriented research as an important, emerging research area, and we hope this supplement will be a resource for researchers."
Funding bodies such as the National Institute for Health Research in the United Kingdom and the Patient-Centered Outcomes Research Institute (PCORI) in the United States are supporting patient-oriented research, along with the Canadian Institutes of Health Research (CIHR). Journals are increasingly asking how patients were involved in the research. CMAJ Open, a sister journal to CMAJ, has launched a patient-oriented research section to attract and publish this type of research.
"Engaging patients as partners makes them active, rather than passive, participants whose experience and ideas can enrich research projects," says Frank Gavin, patient partner and chair, Citizen Engagement Council for the CHILD-BRIGHT SPOR Network. "We hope this publication will be a resource to anyone interested in conducting patient-oriented research."
Additional multimedia tools include:
- Podcast— researchers and patient partners from two projects speak on youth engagement in mental health and addiction services, and providing access to essential medicines
Patient partners and researchers are available for interviews.
The Ontario SPOR SUPPORT Unit (OSSU) is one of 11 units across the country funded by the Canadian Institutes of Health Research (CIHR)'s Strategy for Patient-Oriented Research (SPOR) to help researchers conduct patient-oriented research. It engages researchers, patients and other partners in patient-oriented research to improve the health of Ontarians and the health care system. Through a network of 13 leading health research centres, OSSU provides expertise, infrastructure, training and resources on patient-oriented research, and funds projects that demonstrate the value of this innovative research.
About the CHEO Research Institute
The CHEO Research Institute coordinates the research activities of CHEO and is affiliated with the University of Ottawa. Its three programs of research are molecular biomedicine, health information technology, and evidence to practice research. Key themes include cancer, diabetes, obesity, mental health, emergency medicine, musculoskeletal health, electronic health information and privacy, and genetics of rare disease. The CHEO Research Institute makes discoveries today for healthier kids tomorrow. For more information, visit www.cheori.org
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