PT - JOURNAL ARTICLE AU - Jyoti A. Kotecha AU - Donna Manca AU - Anita Lambert-Lanning AU - Karim Keshavjee AU - Neil Drummond AU - Marshall Godwin AU - Michelle Greiver AU - Wayne Putnam AU - Marie-Thérèse Lussier AU - Richard Birtwhistle TI - Ethics and privacy issues of a practice-based surveillance system DP - 2011 Oct 01 TA - Canadian Family Physician PG - 1165--1173 VI - 57 IP - 10 4099 - http://www.cfp.ca/content/57/10/1165.short 4100 - http://www.cfp.ca/content/57/10/1165.full SO - Can Fam Physician2011 Oct 01; 57 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.