Last updated: 01 July 2015

CBDR/MyCBDR Privacy Notice - Collection of Personal Information

The Association of Hemophilia Clinic Directors of Canada (AHCDC), a non-profit organization of Hemophilia Clinic Directors from across Canada, incorporated under the laws of the Province of Ontario in 1994, and McMaster University, a publicly funded research-intensive university dedicated to teaching, research and service, have developed the Canadian Bleeding Disorders Registry (CBDR), a national registry and database of patients with bleeding disorders which contains demographic and clinical information specific to these disorders, in order to facilitate patient care, research, resource utilization and planning.

AHCDC and McMaster have also made available MyCBDR, a software tool enabling patients to record their own bleed diaries, view their own treatment plans, record blood products utilization and update relevant demographic information.

Both systems are provided for use through the recognized Hemophilia Treatment Centers (Treatment Centers) around Canada.

By registering in MyCBDR, you agree that McMaster University will be holding certain personal information, including information related to your health, hereafter described.

You can consent to be included in the CBDR either directly with your Treatment Center by signing a consent form or by registering for MyCBDR online.

This document explains how your personal information in the CBDR and MyCBDR will be used and protected by McMaster University, so that you can give a free and informed consent.

You can express your consent to registration in MyCBDR by registering online in MyCBDR by clicking on the “Consent” button at the bottom of the Consent page, or in person at your Treatment Center.

Where will the information collected in CBDR and MyCBDR come from?

Part of the information will be provided by yourself during the registration process; additional information will be input for you by the staff at your Treatment Center, who will enter the relevant health and personal information that pertains to you in the connected clinic module, CBDR.

If you were a user of the Helitrax, Ez-log or any other electronic record keeping system, the personal information previously collected through those systems might be imported into MyCBDR, in order to allow continued access to the bleed and treatment records already entered into your electronic record keeping system. Any new other information you enter into MyCBDR will be kept in MyCBDR.

The staff of your Treatment Center will also transfer personal information previously contained in the CHARMS database (Canadian Hemophilia Assessment and Resource Management System) so that they can be incorporated in the CBDR database.

Which information will be collected in the CBDR and MyCBDR?

The personal information about you that is collected in the CBDR and MyCBDR includes your name and contact details, your diagnoses and treatment plan as well as your height and weight, as well as health services resource usage provided as part of the treatment of your bleeding disorder (such as physiotherapy, specialized laboratory results and the dates of your visits), the treatment products you receive, and whether you had any complications from your treatment. This information is not your complete medical record. Rather, it is a special record of you and your bleeding disorder that your treatment team at your Treatment Center can use to identify the best care and treatment modalities for yourself.

What use will be made of the information collected in the CBDR and MyCBDR?

Once your information starts being collected in the CBDR and MyCBDR, it becomes an up-to-date record about your bleeding disorder condition that is used by your treatment team for your health care and the administrative support staff at your Treatment Center to maintain an accurate record. The CBDR record will not substitute the electronic or paper based medical record at your hospital, but will allow a much more functional and efficient access to specific data relative to your bleeding disorder.

Sometimes, your Treatment Center may produce internal reports using your information from the CBDR, which might be used to assess the care you receive and might be shared with you. Other reports will also be produced for the relevant authorities, i.e. the Ministry of health of your province, Health Canada and the Canadian Blood Services (Héma-Québec in the province of Québec). These latter reports are used to help improve healthcare policies and practice and to forecast and plan Canada's clotting factor supply. Reports that are produced from CBDR and intended to leave your clinic will only give statistics and/or summaries that do not allow identification of individuals. Therefore, you will never be identified in these reports.

Will the information collected in CBDR and MyCBDR be used for research purposes?

Your information could potentially be used for research purposes, but only for research projects approved by your Treatment Center’s research ethics committee and any other authority required by the applicable laws. We can anticipate that for some studies (e.g. those using anonymized data collected in the past) the research ethics committee might waive the need for a specific individual consent, while for studies requiring the collection of new information, a specific individual consent would be required. Should the ethical review board mandate to ask you for your willingness to participate in a specific research project, we will contact you as appropriate. In all cases, the information will be coded so that researchers using the data bank will not have access to identifying information.

Who will access my personal information?

Access to your personal information is limited, controlled and managed to make sure that the confidentiality is preserved and that the data is reliable.

The healthcare professionals at your Treatment Center will access your personal information, in order to check its accuracy and use it, if appropriate, as complementary information to improve the management of your health condition and provide you with the care and treatments more appropriate to the specific condition.

In addition, McMaster staff will have access to the personal information, for the following purposes:

• Update the system and perform its maintenance, manage the integrity of the data, provide technical and user support for the CBDR and MyCBDR, in order to ensure proper operation and to make information available to you and your treatment team at your Treatment Center.
• Extract the information for the production of the reports and research projects described above, in a non-identifying form, for the benefit of your Treatment Center and the relevant authorities.

Privacy and confidentiality

Maintaining your privacy and appropriate confidentiality is a top priority to us and strict security rules are in place to guarantee patient privacy is maintained at all times. Only authorised staff from your own Treatment Center or McMaster University can directly access your data to perform specified roles, in order to achieve the purposes described above.

Your information is kept on the CBDR database which is physically located in a secure data centre 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.

What happens if I refuse to consent for the CBDR and MyCBDR?

You can freely choose not to consent to have your data entered into the CBDR without any impact on the treatment you will receive. However, your doctor and the hemophilia treatment team at your Treatment Center will not be able to store, access and elaborate your medical information as easily and efficiently as they could if you were a part of CBDR. It will also be more difficult for agencies such as Canadian Blood Services (or Héma-Québec) to accurately forecast what services and products are needed to optimally treat people with bleeding disorders in Canada.

Can I access my own personal information?

You can directly access and modify your data on MyCBDR. You also have the right to access and seek correction of your personal information on the CBDR, in accordance with privacy laws. Your Treatment Center is generally the best place to go first to access and seek changes to your personal information. If you are unhappy with the response from your Treatment Center, you can contact the privacy commissioner in your province or territory.

If I have changed my mind, how do I opt out of the CBDR?

The CBDR and MyCBDR are voluntary and you have the choice to opt out at any time. If you gave consent to be included in the CBDR directly to your Treatment Center then you will need to opt out by contacting that Treatment Center directly. If you only consented to be included in the CBDR through registering for MyCBDR, then you can opt out of MyCBDR by changing your privacy consent status when you log onto MyCBDR, but you must contact your Treatment Center to opt out of CBDR. Once you withdraw your consent on MyCBDR, you will no longer be able to enter your information into MyCBDR. If you want to have your information deleted from the CBDR, you must contact your Treatment Center.

Capacity

If the patient is incapable of giving his consent, the present consent must be given by a person entitled to do so by the law of their province of residence. For patients under 14, consent must be given by the holder of parental authority or the tutor.