The Right to Participate in Research
Developing and implementing respectful and inclusive research recruitment methods at BC Children’s Hospital and BC Women’s Hospital + Health Centre
What is the Right to Participate?
Right to Participate (RTP) is an initiative to encourage and facilitate research participation from a diverse group of patients and families at BC Children’s Hospital (BCCH) and BC Women’s Hospital + Health Centre (BCWH).
RTP is collaboratively led by the Women’s Health Research Institute (WHRI) and the BC Children’s Hospital Research Institute (BCCHR), the dedicated research arms for BCCH and BCWH. Together, we’re developing and clarifying respectful and inclusive ways in which patients and families can be informed about available research opportunities at our hospitals.
Provincial Health Services Authority (PHSA) has a mandate to conduct and support world-class research in support of life sciences and health advancement opportunities. At BC Children’s and Women’s Hospitals, both services of PHSA, this includes facilitating research that advances knowledge and care for women, newborns, children, and youth in BC and across the globe.
We believe that research is care, and that all patients and their families have the right to know what health research opportunities are available to them, and to benefit from new knowledge generated through research.
The RTP initiative is in accordance with:
- PHSA’s Research Leaders’ joint statement to encourage engagement with diverse research participants as part of a collective commitment to advancing equity, diversity, access and inclusion in research at PHSA research institutions.
- Article 27 of the Universal Declaration of Human Rights which states that everyone has the right to freely enjoy, participate, and share in scientific advancement and its benefits, regardless of their disease type/condition, race, ethnicity, geographic location, sexual orientation, gender, beliefs, age, or ability.
- Justice, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS-2) which states that no groups should be unfairly excluded from the potential benefit of research participation.
Meet the RTP Team
The RTP project team coordinates the development and implementation of new initiatives aimed at facilitating diverse participation in research at BCCH and BCWH.
Our team serves as a resource to both operational and research teams and can help to:
- Clarify related workflows and best practices in research recruitment
- Develop and share supporting tools and resources
- Monitor initiatives to identify and respond to opportunities for continuous improvement
We are committed to ensuring patients’ personal information is respectfully managed in accordance with the authorities within the BC Freedom of Information and Protection of Privacy Act, as well as PHSA’s established privacy and security policies
Monica Ho, Projects Coordinator, Clinical Research Support Unit and primary contact for research at BC Children’s Hospital monica.ho@bcchr.ca
Jesse Veenstra, Reserach Manager, Maternal Newborn Program, and primary contact for research at BC Women’s Hospital + Health Centre jesse.veenstra@bccdc.ca
General inquiries can be directed to rtp@cw.bc.ca
The RTP project team collaborates with many stakeholders across BCCH, BCWH and PHSA Corporate to facilitate research while delivering a high standard of care and upholding PHSA established policies and protocols. Our collaborators include but are not limited to:
- UBC Children’s & Women’s Research Ethics Board
- Data, Analytics, Reporting, and Evaluation (DARE)
- PHSA Privacy
- PHSA Legal
- BCCHR and WHRI staff
- Study teams conducting research at BCCH and BCWH
- Dr. Quynh Doan, Senior Executive Director, BC Children’s Hospital Research Institute
- Dr. Lori Brotto, Executive Director, Women’s Health Research Institute
- Dr Holly Longstaff, PHSA Director of Research Integration and Innovation and UBC C&W REB Chair
- Jennifer Claydon, Director, Clinical Research Operations, BC Children’s Hospital Research Institute (Co-Chair)
- Kathryn Dewar, Senior Research Manager, Women’s Health Research Institute
RTP Initiatives
This initiative is a newly permissible recruitment method beginning summer 2024.
- Quick Reference Guide for research teams: a tool to help research teams determine if this method is right for you.
- Research teams at C&W that would like to use this approach, please email rtp@cw.bc.ca to get started.
In development. Not yet available.
Using a consent to contact database?
Research teams that use a consent to contact database may need to update their consent forms to align with RTP approved messaging. Please contact the RTP team for support with this by emailing rtp@cw.bc.ca
Resources for Researchers
RTP is an evolving initiative, and we are committed to being responsive to the needs of clinical and research teams alike as newly permissible recruitment methods and best practices are developed and implemented.
A growing list of resources including guidelines, workflows and templates are in development to support emerging RTP initiatives. Researchers can request more information about these initiatives and their supporting documents by emailing rtp@cw.bc.ca
RTP Lunch & Learn
Coming soon November 2024
More resources about conducting research at PHSA can be found here.