title: Ethics and privacy issues of a practice-based surveillance system: need for a national-level institutional research ethics board and consent standards.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors: Department of Family Medicine, Queen's University, Kingston, ON, Canada. jyoti.kotecha@queensu.ca
authors: Jyoti A
authors: JA
authors: Kotecha
authors: Donna
authors: D
authors: Manca
authors: Anita
authors: A
authors: Lambert-Lanning
authors: Karim
authors: K
authors: Keshavjee
authors: Neil
authors: N
authors: Drummond
authors: Marshall
authors: M
authors: Godwin
authors: Michelle
authors: M
authors: Greiver
authors: Wayne
authors: W
authors: Putnam
authors: Marie-Thérèse
authors: MT
authors: Lussier
authors: Richard
authors: R
authors: Birtwhistle
mesh_terms: D035843:Biomedical Research / Q000941:ethics*; D002170:Canada; D005194:Family Practice / Q000941:ethics*; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D011320:Primary Health Care / Q000941:ethics*; D016730:Program Development / Q000379:methods*; D011795:Surveys and Questionnaires