Your Right to Participate in Research at BC Children's Hospital
What is the Right to Participate in Research?
All patients at PHSA facilities regardless of their race, ethnic background, disease type/condition, geographic location, sexual orientation, gender identity, age, beliefs, and abilities have the right to participate in and benefit from science advancement.
PHSA conducts and supports world-class research as part of its mandate to improve the health system and the health of British Columbians. At BC Children's Hospital we recognize that research is an important part of what we do to improve care.
Research requires participation from diverse population to make research findings generalizable and more applicable to clinical care. We are therefore taking steps to ensure that all patients are contacted in a respectful capacity about research opportunities that require their consent and may be of interest to them.
Who can access my information?
Respecting your privacy is a key priority. Access to patient information for the purpose of informing our patients about research opportunities is strictly controlled and limited to internal studies that have obtained both research ethics board and institutional approvals from BC Children's Hospital and Sunny Hill Health Centre. Information is only shared with approved research teams in accordance with the BC Freedom of Information and Protection of Privacy Act. Oversight is provided by the Right to Participate Initiative team established by the BC Children's Hospital Research Institute (BCCHR), the dedicated research arm of BC Children's Hospital.
What information can PHSA access?
In order to send research opportunities that we feel are most relevant to you, PHSA will use your contact information, such as:
- Your/your child's name
- Your/your child's home mailing address
- Your/your child's email address
- Your/your child's phone number
PHSA may have access to additional information to help determine whether or not a study is relevant to you, including:
- Your/your child's demographic information such as gender, sex, race, ethnicity, and age
- Your/your child's diagnosis
Please note that your/your child's information will only be used for the purpose of determining whether or not a study is relevant to you/your child and to send those study opportunities to you/your child. Your/your child's personal information will not be used or included in any research study where consent is required, unless we receive written consent from you confirming your participation.
How could I be approached for research studies?
PHSA conducts research activities as permitted by law. There are different ways that you can be approached for studies for which you are eligible to participate:
- During a clinic visit:
- You/your child may be approached by a research team member during a clinic visit.
- During my stay at the hospital:
- You/your child may be approached by a research team member while admitted to the hospital.
- Outside of the hospital:
- You may be contacted by a research team member after you've left the hospital.
- You may receive invitations to participate in research by:
- Text message
- Phone calls after initial information has been sent by mail, email, or text message
Can I choose to not participate?
Yes. Participating in research that requires your consent is always your choice and the decision to participate in a research study will NOT impact the care you and your child receive at BC Children's Hospital.
How is my privacy protected?
BC Children's Hospital is committed to respecting personal privacy, safeguarding confidential information, and ensuring the security of personal information in our custody or under our control. Your 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.
If you have any questions about your privacy or how your personal information is managed under this initiative, please contact the PHSA Privacy Office: privacy@phsa.ca
I've been contacted about a research study and would like more information. Who do I contact?
Please direct all questions about the study to the Study Coordinator listed in the study invitation or consent form.
Who can I contact for general information about research at BC Children's Hospital?
Please visit the Participate in Research section of the BC Children’s Hospital Research Institute website.
Specific questions about how your personal information may be used to support research activities can be directed to rtp@cw.bc.ca.