Patient engagement in research stands to make health care more equitable, accessible, and sustainable. Many patient engagement initiatives are underway at BC Children’s Hospital and at the provincial and national levels.
Over the past several years, it has become increasingly common for patients, families, and caregivers to work alongside researchers as integral members of research teams.
Patient and family engagement — or just patient engagement for short — is defined as the process of designing, planning, developing, and evaluating research projects in close collaboration with researchers. Individuals who engage with research teams in this way are commonly referred to as patient partners.
Patient engagement helps ensure that patient, family, and caregiver input influences all levels of the health-care system. The process marks a paradigm shift from patients being passive research subjects or participants to being active research collaborators.
Being a patient partner can involve a variety of roles and responsibilities. Some of these include attending focus groups, helping to formulate research questions and study designs, collecting and analyzing data, co-authoring research papers for submission to medical journals, carrying out parts of the research itself as a co-investigator, and disseminating study results to target audiences.
Interested in becoming a patient partner?
Here are some patient engagement initiatives at the local, provincial, and national levels:
Mental Health Research Partnership at BC Children’s Hospital
The Mental Health Research Partnership program at BC Children’s supports patient engagement and partnership in the co-development of mental health-related research studies. Interested families can use an online platform to provide contact information and identify areas of interest and preferred level of involvement. The program aims to address shortcomings in current methods of recruiting patient partners and create a convenient system to more easily match research teams and potential partners.
The Mental Health Research Partnership program aims to provide patients and their families and caregivers with opportunities to gain new insights into the research process, and support an area of mental health research that matters to them. The program seeks to partner with patients and families throughout B.C. with lived experience with child, youth, or reproductive mental health, and is not limited to those who are currently receiving or have received care at BC Children’s.
Common responsibilities for partners in the program include helping design research questions, research tool selection, and assisting with interviews and data collection. Those who sign up are under no obligation to accept a partnership opportunity with which they are matched.
To become a mental health research partner and be added to our contact list, we invite you to complete this form. Please note that we cannot guarantee a time by which you will be contacted, as this depends on the availability of research aligning with your identified interests.
Those who wish to learn more can reach out to Gordan Andjelic (Research Project Coordinator, Mental Health Patient Registry) at MH.researchregistry@bcchr.ca.
Become a mental health research partner
Patient Experience Office at BC Children’s Hospital
BC Children’s and BC Children’s Hospital Research Institute benefit from research patient engagement advisors, who help ensure clinical research projects focus on patient-identified priorities, ultimately leading to better patient outcomes. The Patient Experience Office is dedicated to ensuring supportive research environments that facilitate patient-oriented research and highlight patient voices.
The Patient Experience Office enables patients and families to participate in various roles in both research and quality improvement initiatives, including participating in committees, weighing in on protocol or policy design and language usage, consulting on the conduct of ethical research processes, and other relevant research activities.
Patients interested in supporting research or quality improvement projects at BC Children’s or BC Women’s Hospital can sign up here: MyImpactPage - Patients and Families as Partners - Application Form
Those who wish to learn more can reach out to Mary MacKillop (Director, Patient Experience) at patientexperience@cw.bc.ca
Patient Voices Network (PVN)
The Patient Voices Network, administered by the BC Patient Safety & Quality Council, is a community of patients, families, and caregivers working together to improve the health-care system in British Columbia.
Created in 2009 by the Ministry of Health as part of its Patients as Partners strategy, the PVN matches patient partner volunteers with clinicians and health-care researchers seeking to ensure their work is patient-centred.
“When patient and health-care partners work together, the results are improved patient safety, better health outcomes, reduced health-care costs, and better decision-making. It leads to better experiences for patients and care providers.” —Patient Voices Network website
To become a patient partner, follow the steps on the “Become a Patient Partner” page.
CHILD-BRIGHT Network
CHILD-BRIGHT is a Canada-wide research network established in 2016 and based at the Research Institute of the McGill University Health Centre. CHILD-BRIGHT is funded by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR), along with 15 funding partners across the country.
CHILD-BRIGHT’s current focus involves moving patient-oriented research into action and embedding principles of equity, diversity, inclusion, decolonization, and Indigenization into research and health care.
“Our mission is to foster a movement for change: moving patients into research teams, moving research into improved practice and policy, and moving children and families forward towards brighter futures.” —CHILD-BRIGHT website
To get involved, check out CHILD-BRIGHT’s “Get Involved” page.
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Are you a BC Children’s researcher interested in learning strategies to best conduct patient-centred research? Please contact the Clinical Research Support Unit, BC Children’s Hospital Research Institute at crsusupport@bcchr.ca.
