Prospective UTOPIAN Data Contributors
Thank you for your interest in joining the UTOPIAN Data Safe Haven and Welcome!
Below you will find answers to some frequently asked questions. We hope the information listed below would be informative for you to make a decision. Please don't hesitate to contact the UTOPIAN Research Administrator if you have any further questions or comments.
What is UTOPIAN?
UTOPIAN is an initiative of the DFCM at the University of Toronto. It represents a network of over 400 teaching family practices throughout the GTA and beyond with almost half a million patients.
UTOPIAN is a ‘living laboratory’ for research in the community. It can be used for quality improvement activities, identification of potential study subjects for clinical research (with your permission), or evaluation of our healthcare system.
For more information about UTOPIAN, click here.
What is the UTOPIAN Data Safe Haven?
In the UTOPIAN Data Safe Haven, de-identified electronic medical records (EMRs) are extracted from primary care practices and are available for research purposes such as secondary data analyses, using the data for clinical trials or linking the data to other data sets.
For more information about UTOPIAN Data Safe Haven, click here.
Where else are data from UTOPIAN being forwarded?
Data from UTOPIAN are forwarded to:
- The Canadian Primary Care Sentinel Surveillance Network (CPCSSN). CPCSSN is a national project supported by Queen’s University. The data are used to study chronic illnesses as they are managed in our practices across Canada. For more information about CPCSSN, click here.
- The Institute for Clinical Evaluative Sciences (ICES) for purposes of research and health system analysis. For more information about ICES, click here.
- Diabetes Action Canada (DAC) Data Repository. DAC is a large Canadian Institutes of Health Research (CIHR)-funded chronic disease project that aims to improve the care of patients with diabetes through a comprehensive program of research, quality improvement and service. For more information about DAC, click here.
Who is participating UTOPIAN Data Safe Haven?
There are several hospital and community sites in GTA contributing to UTOPIAN Data Safe Haven, most of them affiliated with the Department of Family and Community Medicine.
Who can join?
Any Physician or Nurse Practitioner at DFCM or in GTA using EMRs that are willing to contribute their data to UTOPIAN can participate, provided that the practice and the EMR system the practice uses satisfy the requirements specified below.
What is/are required if I wish to join in?
- At least 4 family physicians from the same practice must agree to join in UTOPIAN Data Safe Haven.
- As of May 2017, primary care practices using one of the following supported EMR systems is able to join in:
- Practice Solutions
What are the privacy measures in the data extraction process?
We developed and maintain very strong privacy protection designed to ensure that both patient and primary care practitioner’s data are secure. We do have REB approval in place for the UTOPIAN Data Safe Haven.
UTOPIAN data are kept in a separate server, with separate technological and physical safeguards at the Centre for Advanced Computing in Kingston, Ontario. Access to UTOPIAN data is strictly limited to the UTOPIAN Data Analytics Manager or their named and trained designate only. All work with UTOPIAN data is on password-protected and encrypted hard drives in computers located in a secure location, with additional physical safeguards with access to only those who have specific permission.
Do I get anything back?
Participating physicians will receive regular reports containing metrics measuring their own care practices, compared to local peers and provincial and national physicians. These reports provide timely feedback that facilitates better care planning to Canadians and better management of chronic diseases in the primary care setting. Have a look at a sample report, click here.
Participating physicians may get involved and receive facilitation support in research projects that answer questions important to your practice and your patients.
Depending on the research design and scope, participating physicians may get the opportunity to collaborate with other clinician researchers, physicians and/or practices affiliated with UTOPIAN and get access to rich collective health data through UTOPIAN Data Safe Haven. The data stored in UTOPIAN Data Safe Haven can be linked for national level primary care studies at CPCSSN, for administrative data at ICES in Ontario and for the study of a very prevalent chronic condition, diabetes, at DAC.
Is there any cost associated with contributing data?
No costs are associated with contributing data to the UTOPIAN Data Safe Haven.
How do I join?
If you are interested, please contact the UTOPIAN Research Administrator.
We can send you more information or come and talk to your group. If you decide to participate, our Data Manager will arrange to extract de-identified information directly from the EMR into a secure computer server; this is done through the computer without bothering you or your secretary.
The data will only be used in ways of which you approve.