Notice to users of the Motherisk Call Centre regarding a privacy breach

Toronto - The Motherisk Program was established at The Hospital for Sick Children (SickKids) in 1985 to conduct research into the safety and impact of drugs on the developing fetus and newborn and make the results of that research available to expectant and new mothers and their caregivers. Information is made available through the Motherisk website and call centre, which are staffed by clinical and other SickKids personnel. The call centre has several helplines which provide scientific evidence-based information to women, their partners and their health-care providers. The call centre responds to approximately 30,000 calls per year. When callers contact a helpline, they are informed that a record of their call will be kept for the purposes of quality assurance and follow-up if required.

What have we found?

SickKids has discovered that between 2000 and 2014, approximately 1,400 records of calls were accessed by call centre staff for research-related purposes, without first going through our established process for research approval. In the vast majority of cases, staff used the records only to determine whether a caller's information was relevant to research related to the use of a diabetic drug and over-the-counter antihistamines and anti-nausea medications. In a small number of cases (approximately 70), having confirmed that the information was relevant, staff used the caller's contact information to seek consent for the use of the information and/or participation in a study and, where consent was provided, used the data for research purposes. In all of these cases, the use was without authority and contrary to SickKids' policies and privacy law.

What have we done?

Where we discovered that the research approval process had not been followed, we ceased on-going research and any publication based on that research. We also verified that no caller information ever left SickKids and that the information was only accessed by staff working in the call centre. According to the SickKids Research Ethics Board, the board which reviews research applications, had the established process been followed, they would have likely approved the use of caller information without consent.

Going forward

SickKids is committed to ensuring that research is conducted in accordance with REB requirements, applicable standards and laws and regrets that its processes were not followed in the cases described above.

SickKids has made it clear to all call centre staff that no use of caller information for research-related purposes is permitted without REB approval. Any questions regarding these matters can be directed to the SickKids' Privacy Office (open Monday to Friday, 8:30 a.m. - 5 p.m.) at 416.813.7474 or privacy.office@sickkids.ca, or to Ontario's Information & Privacy Commissioner at 416.326.3333 or 1.800.387.0073 or commissioner@ipc.on.ca.