Research Connection | Pentest Site

All about Research Connection

Research Connection is a program that connects families to research opportunities at CHEO. It allows CHEO Research Institute approved researchers, acting as agents of CHEO, to contact CHEO families, children and youth directly to ask if they would like to learn more about a specific study that they are matched to based on eligibility criteria.

This means you might be contacted in one of three ways:

a notification in MyChart if you or your child has an active account; or
a phone call; or
be approached by a CHEO researcher at your in-clinic appointment or visit.

Research Connection helps improve awareness and access to research opportunities by connecting researchers and families, removing barriers to research, and making research recruitment more equitable. In turn, this helps improve the quality of research at CHEO, which benefits all children and youth.

Starting on February 1, 2025, any child or youth currently aged 21 and under who receives services at CHEO is automatically included in the Research Connection program, unless they choose to withdraw from the program.
This includes all new patients of CHEO following their first appointment or visit at CHEO, unless they choose to withdraw from the program.

Watch this video with multilingual subtitles here

Why does CHEO have a Research Connection program?

CHEO is a teaching and research hospital. Findings from research studies can lead to better care and health outcomes for children and youth. By participating in research, you can enable better pediatric care for all.

How does the Research Connection program work?

CHEO researchers and studies who have been approved by the CHEO Research Institute and the CHEO Research Ethics Board can enhance their study recruitment through the Research Connection programOnce approved, the research team will receive a confidential contact list of patients who have been matched to their study based on eligibility criteria. This confidential contact list is created in a secure way through CHEO’s electronic medical record system.To generate a contact list, an electronic scan of all patient health records is conducted and is compared to the study participation criteria. This means that no individual will look at your personal health information or health record. Not all research studies at CHEO will recruit participants through the Research Connection program.Research study recruitment at CHEO can still happen in other ways, such as your care provider telling you about a study, a poster you may see in a clinic, or information on the CHEO Research Institute website.

Do I have to sign up for Research Connection or am I automatically included?

No action is required. All existing patients of CHEO who receive services after February 1, 2025, will be automatically enrolled in the Research Connection program. All new patients of CHEO who receive services after February 1, 2025, will be automatically enrolled in Research Connection after their first appointment at CHEO, unless they choose to withdraw. Here are some examples:Amy, age 12, came to CHEO and received services from CHEO in October 2024. When Amy returns for her follow-up appointment in March 2025, she will automatically be enrolled in Research Connection unless she chooses to withdraw from the program. Billy, age 5, comes to CHEO for the first time in April 2025. After his first appointment he is automatically enrolled in Research Connection unless his caregiver chooses to withdraw from the program.Zakia, age 14, came to CHEO and received services in September 2023. She doesn’t return to CHEO again. She will not be enrolled in Research Connection.

What is research and what are the potential benefits of participating in research?

Health research involves building knowledge and gaining a better understanding of how the body works, how medical conditions and illnesses affect different people, and how we can ultimately improve patient care and health outcomes. Research helps us learn how to:Prevent or diagnose a diseaseDetermine the impact of a medical condition or treatment on a patient’s quality of lifeTest a new treatment or innovationDetermine the prognosis of a disease (how a disease may look over time in someone’s body)Improve a patient’s care journey and health outcomesAll research studies are different. Some might involve surveys or interviews, while others might include technology or medication. Some might take place over a few hours and others might need longer, such as days, months or years. Research benefits children, youth and families by leading to improvements in treatments and health outcomes. CHEO’s research has led to life-changing discoveries that inspire the best life for every child and youth in our community and around the world.

Why does research involve children and youth?

Children and youth are not the same as adults – their bodies and brains differ from adults. This means that treatments and illnesses can affect them differently. Conducting research with children and youth helps us learn more about how to improve outcomes and treatments specifically for them.

How will Research Connection benefit families, children and youth?

Quality research benefits children and youth everywhere. Research Connection is designed to improve access to research at CHEO, remove barriers and increase equitable recruitment to research studies. This can improve the quality of research and its findings, which ultimately benefits the delivery and outcomes of pediatric care.

What does that mean for you?

Being a part of Research Connection does not mean you are automatically enrolled as a participant in a research study. It means you might be contacted by an approved researcher to learn more about a study opportunity you have been matched with.

You can choose to say yes or no to learn about the study. If you choose to learn more about the study, you can then choose to participate or not participate in the study itself.

The care and the services you receive at CHEO will not be affected by your decision to participate or not participate in the Research Connection program or any research studies you might be contacted for.

What does this mean for my care at CHEO?

The care and the services you receive at CHEO will not be affected by your decision to participate, or not participate, in the Research Connection program or any research studies you might be contacted for.

Are you agreeing to participate in a research study?

Research Connection is not a research study. It is a program that helps recruit families to participate in research.If you choose to learn more about the study, you can choose to participate or not participate in the study itself.

How often might you be contacted?

You will only be contacted if you have been matched to an approved study taking place at CHEO based on eligibility criteria. If you are matched to a study, you might be contacted once, a few times a year, or perhaps not at all.

How do we keep your personal health information safe?

The Research Connection Program fully complies with and follows the Personal Health Information Protection Act, 2004 (“PHIPA”) in the use of limited personal health information for research participant recruitment purposes. Only people who need to see your personal health information are allowed to look at it. Approved researchers using the Research Connection program will not be allowed to access your personal health information – we have policies and procedures in place to ensure this.

How is a researcher approved to use this program?

Only CHEO researchers who have been approved by the CHEO Research Institute and have a study approved by the Research Ethics Board can leverage the Research Connection program. Approval is only provided for specific types of studies (minimal risk studies currently). Researchers must also agree to follow the Research Connection policy, which outlines areas such as data and privacy protections for the program.

What personal information will researchers have access to through the Research Connection program?

Approved and specific members of the research team will only see:

your name

relevant contact information used to contact you, such as phone number

language preference

your contact preferences from MyChart

Any guidance you have provided on who to contact for you/your child/youth.

How is your privacy protected?

The Research Connection Program complies with and follows the Personal Health Information Protection Act, 2004 (“PHIPA”) in the use of limited personal health information for research participant recruitment purposes.

Robust safeguards have been put in place to make sure the information remains private and confidential. Approved researchers will not be allowed to access your personal health information through the Research Connection program.

If you have privacy related questions or concerns, please contact
privacy@cheo.on.ca.

Unsure about participating in Research Connection?

Where can you find more information to help you decide?

We encourage you to learn more about the Research Connection program by reviewing the information on this webpage. You can talk to your CHEO health care provider to discuss the program and your decision.

You can also contact the Research Connection office. We are here to help you learn more about the program so that you can make the decision that is best for you.

Contact us at researchconnection@cheo.on.ca or 613-737-7600 ext. 6860.

Withdraw from Research Connection

You can withdraw at CHEO by asking a clerk or clinician, or by:

Our online form
Phone: 613-737-7600 ext. 6860
Email: researchconnection@cheo.on.ca

If you withdraw when at CHEO by asking a clerk or clinician, this will take effect immediately. If you withdraw by phone, email, or through the form on the CHEO website, this will take effect within two (2) business days.

The power of a family's contribution to research

“We should all be a part of research and, for me, being involved in research is just another part of that journey to honour Griff," said Tamy.

Participating in research: A family's perspective

“It's incredible how life-changing this research is for kids. It makes such a big difference,” said Melanie, referring to studies investigating innovations and technology. “I feel so much hope for all kids with disabilities.”

CHEO’s commitment to privacy

CHEO is committed to protecting your privacy and keeping your information secure. In compliance with the Personal Health Information Protection Act (PHIPA), all healthcare information is kept strictly confidential, secure and protected.

For any questions regarding privacy, please contact the Privacy Office at privacy@cheo.on.ca or 613-737-7600 ext. 3899.

Contact us

Who do I contact for more information or to provide comments about Research Connection?

You can contact the Research Connection office at researchconnection@cheo.on.ca or 613-737-7600 ext.6860.

You can contact the Patient Experience office at experience@cheo.on.ca or 613-737-7600 ext. 3078.

If you have a privacy related question or comment, please contact our Privacy Officer at privacy@cheo.on.ca.