Patient Oriented Research
We are committed to upholding the Canadian Institutes of Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) Framework and guiding principles of inclusiveness, support, mutual respect and co-building, and recognize that patient and public engagement not only includes those receiving care, but also their families, support network and members of the public.
What is patient partnership?
Patients and members of the public who are engaged to support, or collaborate on a research study are referred to as ‘Patient Partners’. Patient partners with lived and living experience (sometimes of a particular health condition) can work in partnership with researchers to ensure research questions and processes are meaningful, relevant, equity-based, trauma-informed and patient-centered. The role of a patient partner may vary in scope from project to project.
Why is patient partnership important?
Research conducted in collaboration with patient partners can improve the quality, appropriateness, and relevance of your research. Engaging patients as partners has been demonstrated to lead to better health outcomes for patients, and overall improved healthcare systems. Accordingly, funding agencies like CIHR, Michael Smith Health Research BC, and others, are increasingly requiring patient partner engagement in research projects and programs.
Resources
Patient Partner Onboarding
The CIHR Institute for Musculoskeletal Health and Arthritis (IMHA) has been at the forefront of patient and public engagement. They have a robust list of resources to prepare, train, and guide research teams, which can be found here.
Additionally, the WHRI, in collaboration with BC Children’s Hospital Research Institute, has developed guidance for Investigators and research teams looking to engage patient partners in research at the Children’s & Women’s Hospital Campus, including onboarding and training requirements. This guidance represents best practice and requirements for engaging patients partners in research with WHRI and BCCHR:
Appendices: Patient Partner Onboarding for Research
Research Patient Partner Onboarding Sorting Tool (to be completed by the study team after reviewing the Patient Partner Onboarding for Research document).
Lunch and Learn Episode: Onboarding and Training Patient Partners in Research: New Guidance and Recommendations.
REACH BC
REACH BC makes it easier for you to connect with potential research participants and patient partners. It gives you access to a broad population across BC—in urban and rural settings, across multiple health authorities. REACH BC matches you with interested volunteers, who you can review and select as participants in your study.
You can also use REACH BC to find patient partners!
New to REACH BC? You can watch the full recording of the webinar on our YouTube channel.
RE-IMAGYN BC – Youth Research Associate Virtual Qualitative Research Training Manual
Training is an important part of co-creating research with community and patients, as it prepares all team members with the skills to engage in research meaningfully. This training manual is shared by the RE-IMAGYN BC (Relationship and gender EquIty Measurement Among Gender-inclusive Young women and Non-binary youth in British-Columbia) Study. The RE-IMAGYN BC study aims to better understand and measure relationship equity among youth in BC. This manual was created to train Youth Research Associates (YRAs) in qualitative research methods to meaningfully participate in research with the RE-IMAGYN study. The role of YRA is a type of “peer research associate”– a researcher who uses their expertise from their lived/living experience as part of the researched community to guide and contribute to research. Throughout this training manual, you will find details of the RE-IMAGYN BC YRA training (including agendas, slides, and pre-work) and reflections on the process and design of the training from the team. You are invited to use this training manual to inform and shape your own training.
Contacts
WHRI
Nicole Prestley, Manager, Research and Knowledge Translation, WHRI
Email: Nicole.Prestley@cw.bc.ca
Children’s & Women’s Patient Experience
C&W Patient Experience Office
Email: patientexperience@cw.bc.ca
BC SUPPORT Unit
The BC SUPPORT (SUpport for People and Patient-Oriented Research and Trials) Unit is part of a national program to help health care research be more relevant and meaningful to patients, so that they get the best possible health care.
Visit their website or email You can also email at bcsupportunit@healthresearchbc.ca.