RT Journal Article
SR Electronic
T1 Ethics and privacy issues of a practice-based surveillance system
JF Canadian Family Physician
JO Can Fam Physician
FD The College of Family Physicians of Canada
SP 1165
OP 1173
VO 57
IS 10
A1 Jyoti A. Kotecha
A1 Donna Manca
A1 Anita Lambert-Lanning
A1 Karim Keshavjee
A1 Neil Drummond
A1 Marshall Godwin
A1 Michelle Greiver
A1 Wayne Putnam
A1 Marie-Thérèse Lussier
A1 Richard Birtwhistle
YR 2011
UL http://www.cfp.ca/content/57/10/1165.abstract
AB Objective To describe the challenges the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) experienced with institutional research ethics boards (IREBs) when seeking approvals across jurisdictions and to provide recommendations for overcoming challenges of ethical review for multisite and multijurisdictional surveillance and research. Background The CPCSSN project collects and validates longitudinal primary care health information (relating to hypertension, diabetes, depression, chronic obstructive lung disease, and osteoarthritis) from electronic medical records across Canada. Privacy and data storage security policies and processes have been developed to protect participants’ privacy and confidentiality, and IREB approval is obtained in each participating jurisdiction. Inconsistent interpretation and application of privacy and ethical issues by IREBs delays and impedes research programs that could better inform us about chronic disease. Results The CPCSSN project’s experience with gaining approval from IREBs highlights the difficulty of conducting pan-Canadian health surveillance and multicentre research. Inconsistent IREB approvals to waive explicit individual informed consent produced particular challenges for researchers. Conclusion The CPCSSN experience highlights the need to develop a better process for researchers to obtain timely and consistent IREB approvals for multicentre surveillance and research. We suggest developing a specialized, national, centralized IREB responsible for approving multisite studies related to population health research.