Advancing Healthcare for Equity groups through Electronic Health Records by Disaggregated (Broken Down) Data Collection in Pediatrics.
Summary
This study wants to make healthcare better for all groups by collecting detailed information in children’s medical records. It is led by Dr. Nicole Johnson from the University of Calgary. The study has been approved by the University of Calgary’s Health Research Ethics Board. It is also supported by Children’s Healthcare Canada and the Canadian Paediatric Society.
We are looking for people in Canada to join a group discussion. This includes youth, caregivers, students, doctors, researchers, clinic staff, hospital staff, tech workers, legal experts, and ethicists. The goal is to hear your thoughts on what kind of personal information should be collected in children’s health records.
Taking part in the study is your choice. You can stop at any time. The discussion will be in person or on a video call. It will last about 1.5 to 2 hours. We will ask you questions about how health information is collected now. We also want your ideas on what information should be added, like race, income, sex, age, gender, education level, social status and immigration.
We will record the session and ask you to fill out a short form about yourself. This form will ask about your age, income, and background. Everything you say will stay private. To thank you for your time, you will get a $25 gift card.
Eligibility
Eligible ages: 16 to 24
Accepts healthy participants: Yes
Inclusion criteria:
1. Youths from communities such as Blacks, Indigenous, People of Colour, Women, Girls, Children with disabilities, and 2SLGBTQIA+ communities who has visited a hospital.
2. Caregivers of Youths from Equity Deserving Groups who has visited a hospital due to an illness in the past or present.
3. Trainee, clinician, pediatricians, researcher, Innovators, clinic administrative staff, hospital administrator, technology support, legal counsel, or ethicist.
4. Living in Canada
Exclusion criteria:
1.Pediatrics outside Equity deserving groups.
2. Outside Canada.
3. Youths less than 16 years of age,
Participate
Fill out the following form if you want to participate in this research
Collection of personal information
Your personal information is collected under
the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If
you have any questions about the collection or use of this information, please visit our
Access to Information page.
Additional information
Contact information
If you have any questions or comments, please feel free to contact Dr. Nicole Johnson at Nicole.Johnson@albertahealthservices.ca or Victoria.fajenyo@ucalgary.ca or call 403-955-7164
Principal investigator:
Nicole Johnson
Clinical trial:
No
REB-ID:
REB24-1375