Letter of Information and Consent Form

Principal Investigator: Dr. Michael Cusimano, MD, MHPE, FRCSC, PhD, FACS, FCAHS
Professor, Division of Neurosurgery, St. Michael’s Hospital, University of Toronto

You are being invited to consider participating in this research study because you are either a neurosurgical patient or a family member acting as an informal caregiver of a neurosurgical patient, who has had a minimum of one clinical encounter with a staff neurosurgeon.  

Purpose of the Research
The purpose of this study is to investigate patient and informal caregiver perspectives on resident doctor evaluations and to determine how best to incorporate patient evaluations and feedback into existing medical programs.  Therefore, we believe your experiences and opinions will provide valuable perspectives on what patients’ value in their neurosurgeon and on how patient perspectives and feedback can be incorporated into the evaluation of resident doctors to ensure the development of well-rounded neurosurgeons that effectively meet the needs of patients. 

Description of the Research & Study Duration
Overall this study will run for about one year. Your involvement in the research study, which involves completing the questionnaire, will take approximately 15-30 minutes.  If you are unable to complete it all at once, you may return to it at another time by accessing the survey link on the same computer/device and same internet browser.  We are hoping to have a minimum of 93 respondents.

In the questionnaire, you will initially be asked some general demographic questions about yourself and about your neurological diagnosis.  You will not need to provide specific details nor will you be asked specific questions about your medical history. Your medical records will not be reviewed or incorporated into this study.  Also, the differences between the role of a “staff neurosurgeon” and a “neurosurgery resident” will be explained to you.  We will then ask you about your expectations of your neurosurgeon and about your ability and interest in evaluating resident doctors.

Potential Harms, Benefits, & Alternatives to Participation
There are no risks to you from participating in this survey. Participation will not involve any additional costs to you. There is no compensation for participating in this study. We hope that by obtaining your perspective on neurosurgery resident performance evaluations, we will be able to identify potential gaps in the existing neurosurgical residency training program and as such, you will be contributing to the training of neurosurgeons who effectively meet patient expectations and accountability needs. 

Because this study is not looking at ways to provide medical treatment to you, the alternative to taking part in this study is not to take part. Whether you chose to complete or not complete the survey, it will not have any impact on the quality of any future medical care you might need.
Confidentiality and Privacy
If you decide to participate in this study, the research team will only collect the information they need for this study. No names or contact information will be collected for this study and all your data will be kept confidential and only accessible to trained study personnel. If you do not want your answers to be linked to you, please do not enter your name or any other piece of information that identifies you into any of your answers below.

Please note that data collected using SurveyMonkey resides on the SurveyMonkey servers which are located outside of Canada, and may be subject to privacy laws and legislation which differ from those in Canada (such as the USA PATRIOT Act of 2001, which entitles US government bodies to access information held in the US (IP addresses), for governmental security and other purposes). While we researchers will not be collecting or using your IP address, SurveyMonkey does record respondent IP addresses in backend logs and deletes them after 13 months. Your data will only be used for research purposes and accessed by research personnel that have been trained for this study. The study investigators will keep your study records securely stored for 5 years following the publication of the study or 10 years after the completion of the study – whichever comes first. 

Publication of Results
We hope to report the results of this study at scientific meetings and in an article in a scientific journal. Direct quotes from your responses may be used in reports or publications, but the quotes will not be attributed to you or contain any information that could be used to identify you. You can ask us to send you a copy of the article when it is published by contacting us at the emails below.

Participation and Withdrawal
Your participation is completely voluntary. You can choose to end your participation in this survey (called withdrawal) at any time prior to clicking "DONE", without having to provide a reason.  This being said, should you click "DONE" after completing the questionnaire, because this questionnaire does not require any identifying information, your specific answers will be anonymous and therefore, impossible to withdraw from the study.

Who do participants contact for questions?
If you have questions about taking part in this study, you can talk to the research team: Luke Bannon at Luke.Bannon@unityhealth.to

If you have any questions regarding your rights as a research participant or have any concerns with the study, you may contact the Unity Health Toronto Research Ethics Board Office at 416-864-6060 ext. 2557 during business hours (9:00am to 5:00pm).
By clicking the <<NEXT>> button below, I confirm that I have read this form and decided that I will participate in the study as described above. Its general purposes, the particulars of involvement, and possible risks and inconveniences have been explained to my satisfaction. I understand that I can discontinue participation at any time.