The PROBE (Patient Reported Outcomes, Burdens and Experience) questionnaire has been developed by the Patient Outcomes Research Group Ltd. (referred to as PORG). McMaster University manages the PROBE database, website and app. For the app, this is done in collaboration with Design2Code Inc. (referred as D2C). "We", "us", or "our" refers to PORG and McMaster.
Information we collect
When you use the Service, information we collect may include, but is not limited to:
While using the Service, we may ask you to provide us with certain personally identifiable information ("Personal Data"). Personal Data means any information about an identified individual or an individual whose identity may be inferred or determined from such information, other than business contact information (e.g. name, title, business address) and this may include, but is not limited to:
Under certain circumstances we may be required to disclose Personal Data without your consent. Such circumstances may include, without limitation and subject to applicable laws:
Who will access your information and Personal Data and how they will be used:
The mission of PROBE is to investigate and directly probe patient perspectives on outcomes they deem relevant to their life and care, to enhance the direct patient-voice in health care decision-making. Aggregated de-identified data from patients and controls from your country will be returned at your country’s hemophilia NGO through the PROBE dashboard or through periodical reports under specific data transfer or data reporting agreements.
Your information could be used for clinical and other research purposes, but only for projects approved by a research ethics committee and any other authority required by the applicable laws. We anticipate that for most studies (e.g. those using data collected in the past, duly de-identified, aggregate and anonymous information) the research ethics committee might waive the need for your specific individual consent. In all appropriate cases where no identifying information is necessary, the information will be coded so that researchers using the data bank will not have access to any identifying information. Your email address will never be provided to third parties. We may use your e-mail address to inform you about updates of the Service, research projects you may be entitled to participate through the Service, or any other similar activity. We will limit the volume of these communications to the lowest possible level.
In all cases, the information will prevent direct identification of individual patients. Specifically, your e-mail address and user name will never be shared with any external entity, and will only be used to enhance your participation to the PROBE project through the Website and mobile app. McMaster and PORG may use your e-mail for communicating with you in relation to the PROBE project.
How we store and protect your data
Access to your Personal Data is limited, controlled, and managed to make sure that confidentiality is preserved. Maintaining your privacy and appropriate confidentiality is a top priority to us and strict security rules are in place to guarantee privacy is maintained at all times.
Your information is kept on the PROBE database which is physically located in a secure data centre at McMaster University, in Canada, with appropriate physical, administrative and technical safeguards in place. These procedures protect your information from misuse, unauthorised access, interference, alteration, loss and/or disclosure.
Your information, including Personal Data, may be transmitted to - and maintained on - computers located outside of your state, province, country or other governmental jurisdiction, where the data protection laws may differ than those from your jurisdiction.
If you are located outside Canada and choose to use the Service, please note the data is sent to our servers in Canada.
Your rights to access and control your personal data
Very little Personal Data is collected through the Service. At any point in time, you may request complete erasure of your Personal Data. After deleting your information, some of your data may still be stored as part of previously generated aggregated statistics. At any time, and without providing a reason, you may request to obtain a copy, in an intelligible electronic format, of the data stored in your PROBE record. Any request to obtain or delete your data should be directed to firstname.lastname@example.org. If you decide to complete the questionnaire anonymously, you will not be able to obtain your data, because we will not be able to retrieve them.
What happens if you decline to use PROBE App, to create a PROBE account, or to login with your national bleeding disorder registry account?
If you choose not to create an account in the PROBE App, PROBE website or to login through your national bleeding disorder registry for longitudinal data collection, you may choose to complete the questionnaire anonymously, either electronically or on paper. The data will be stored separate from the identified PROBE database and could be used in reports and research projects.