The Department of Family and Community Medicine practice-based research network of University of Toronto (UTOPIAN) is working on creating a secure platform called Data Safe Haven that 1) integrates EMR data across practices and links these with ICES holdings to facilitate health research, and 2) enrolls patients in a range of high quality research to improve the quality and efficiency of patient services. We are consulting with multiple stakeholder groups to better understand what are acceptable conditions for use of primary care EMR data for health research and planning. We would like to hear your views on this topic. The research has received University of Toronto REB approval.
We will be conducting a 3-hour consultation with 8-12 “data regulators” in January 2016. Please see the study summary below. Should you or your colleagues have any questions or if you are interested in participating, please contact our research assistant Jamie Wang at Jianmin.Wang@nygh.on.ca. The meeting location is TBD but it is anticipated that this will be held in downtown Toronto. Potential dates are listed below; please contact Jamie for times.
- Friday, January 22
- Monday, January 25
- Friday, January 29.
An $80 Shoppers Drug Mart gift cards will be offered as a token of appreciation and to cover any out of pocket expenses. Refreshments/lunch will be served, depending on the meeting time. More information can be found in the study summary below. While participants are welcome from outside of Toronto, budget constraints limit our ability to cover travel expenses beyond the SDM voucher.
Please feel free to circulate the study information among your colleagues.
We look forward to your reply,
Gordon F. Cheesbrough Research Chair in Family and Community Medicine
Director, University of Toronto Practice-Based Research Network (UTOPIAN)
Professor, Family & Community Medicine; Dalla Lana School of Public Health
Adjunct Scientist, Institute for Clinical Evaluative Sciences
Associate Professor, Institute of Health Policy, Management and Evaluation
University of Toronto
UTOPIAN Data Safe Haven Key Stakeholder Consultations
Background and Purpose:
Electronic medical records (EMRs) are now commonly used in primary care practice. In addition to use for documenting clinical care and aiding in clinical decision making, data from the EMR may be used for a wide range of research and planning such as: monitoring the effectiveness and safety of a treatment; evaluation and improvement of quality of care; and identification of potential research participants.
The University of Toronto Department of Family and Community Medicine is working with a number of family health teams in the Greater Toronto Area to develop a way to de-identify and pool their electronic medical record data in a way that will allow for use and linkage of data from these records for academic health research. It is important to determine the needs and expectations of various stakeholders (data users, data custodians, regulators, and patients) to ensure the continued trust of the public and those who are responsible for ensuring the data are managed appropriately according to the laws and other ethical guidance in Ontario.
To this end, we are conducting a series of focus groups to compare key stakeholders’ perspectives on what are acceptable uses of EMR data, users, data linkages, and conditions for use of health information for research.
Why is this study important?
Findings from our study will help inform policies around how data are collected, stored, governed and accessed for research purposes.
We will be conducting focus group meetings with:
- data users (academic, government and private sector);
- data custodians (chiefly primary care providers and health care organizations that have custody over personal health information);
- data regulators (privacy officers, REB chairs/members, professional Colleges); and
- patients and the general public
Discussions will be based on case studies that represent the potential ways in which data from primary care EMRs will be used and linked with other health-related records. Following these consultations with the different stakeholder groups, representatives from each group will come together to discuss areas of agreement and differences in perspectives across different stakeholder groups and to identify areas of common ground.
The meetings will be led by a professional moderator. Each will run 3 hours, with the exception of patient/public meetings, which will run 4 hours to account for additional time required to provide more background information on how the system works. The meeting will be audio recorded and transcribed for data analysis.
Feedback to Participants
A brief lay-language summary of the findings will be circulated to participants. A separate manuscript will be prepared for publication in an academic journal and will be provided to participants on request.