PRIVACY POLICY

Canadian MPN Network (Last updated December 14, 2021)

INTRODUCTION

The Canadian MPN Network (CMPNN) is a national organization that focuses on Patient Advocacy, Education and Patient Support. Its Mission Statement is “The Canadian MPN Network supports those Patients who have been diagnosed with an MPN (Myeloproliferative Neoplasm) living in Canada, as well as their Care Partners, family members and the medical professionals treating them.”

The Canadian MPN Network is a not-for-profit organization formed in 2014 and our National Office is at PO Box 64538, 4630 Hwy 7E Unionville, Markham, ON L3R 0M9 (references to ‘us’, ‘we’ or ‘our’ being construed accordingly). We are committed to protecting and respecting your personal data when you access and use our ‘Website’ and/or participate in any of our national or regional activities and programs.

This Privacy Policy sets out the basis on which any personal data we collect from you, or that you provide us, will be processed by us. ‘Personal Data’ means any information which relates to you personally or can be used to identify you. Please read the following carefully to understand our practices regarding the use of your personal data.

OUR PHILOSOPHY

At the Canadian MPN Network, we believe that all individuals should have the choice on how information that identifies them should be managed by organizations such as the Canadian MPN Network. This is particularly the case with respect to personal health information that many people consider to be the most sensitive information about them. We also believe that Patients and Care Partners may benefit from better healthcare when their personal health information is shared appropriately using new technologies and that they will be willing to share such information when they have trust and confidence that their information will be used according to their wishes and expectations.

AMENDMENTS

Please note that this Privacy Policy is subject to change from time to time so please check that you have seen the latest version.

PERSONAL DATA WE MAY COLLECT FROM YOU

We collect information from you in a variety of ways: your visits to our Website (canadianMPNnetwork.ca) and when you email or verbally communicate to us your details via CMPNN programs or activities. We may obtain sensitive personal data about you, including personal health data, if you volunteer it during the completion of any data capture forms, by providing it directly to a regional Group Coordinator or by any other means.

The Canadian MPN Network limits the receipt of information that it collects from Patients and Care Partners to that which is necessary for the purposes of a Program or activity. It does not receive or collect more personal information than is reasonably necessary for these purposes.

You may request removal of your personal information from our national and/or regional records at any time, but its removal may prevent your participation in CMPNN programs and activities. Contact [email protected] for further action.

We’ll handle your details according to the Personal Health Information Protection Act, 2004 (Ontario).

USE OF YOUR PERSONAL DATA

We may use your personal data and other information we gather for the purposes of:

  • delivering programs and activities nationally or regionally
  • providing you with access to our Website
  • dealing with your enquiries and requests
  • providing you with newsletters, information about activities, forums, regional Support Group meetings, or other events and details of information that we have identified as likely to be of interest to you
  • administering, supporting, improving, and developing our services nationally or regionally
  • providing de-identified information to form demographic profiles of our Patient base, and such.

ACCOUNTABILITY

The Canadian MPN Network nationally and regionally is responsible for personal information that has been provided to it by all individuals who participate in its activities and programs. This includes information in the custody of the Canadian MPN Network, as well as that which is processed by its Designates (including regional CMPNN Group Coordinators) in the normal course of Canadian MPN Network activities and programs. The obligations of the Canadian MPN Network with respect to the appropriate management of personal information are set out in the terms of Personal Health Information Protection Act, 2004 (Ontario).

The Canadian MPN Network maintains its accountability for personal information in the following manner:

  • It has identified that its Board Chairperson is the Canadian MPN Network Privacy Officer, or their Board-approved designate, is the individual responsible for its compliance. This ‘Privacy Officer’ can be contacted at [email protected]
  • It has developed and implemented policies and procedures to give effect to the principles in this Privacy Policy.

SAFEGUARDING YOUR PERSONAL DATA

The Canadian MPN Network endeavours to protect the confidentiality and security of the personal data that it collects. It takes steps that are reasonable in the circumstances to protect the information against theft, loss, and unauthorized use, disclosure, copying, modification, or disposal. The Canadian MPN Network:

  • uses administrative, physical, and technical means to safeguard personal information;
  • makes employees and leaders aware of the importance of maintaining the confidentiality of personal information; and
  • uses care in the disposal or destruction of personal information to prevent unauthorized persons from gaining access to the information.

DISCLOSURE OF YOUR PERSONAL DATA

We will not share your data with third parties without your consent except as legally required to do so, or where such disclosure is necessary to enable third parties with whom we work to assist us in providing our services to you or to respond to your enquiry. Where we pass your data to any third parties, we will require those third parties to act in accordance with our Privacy Policy and adopt appropriate security measures to protect your data. Whenever possible, your information will be grouped and de-identified.

SECURITY OF YOUR PERSONAL DATA

Unfortunately, the transmission of information over the internet or public communications networks can never be completely secure. We will take appropriate technical and organizational security measures to protect the personal data that you submit to us against unauthorised/unlawful access or loss, destruction or damage, although we cannot 100% guarantee the security of data that you provide to us.

THIRD-PARTY WEBSITES

Our communications and Website may contain links to other websites that are outside our control and are not covered by this Privacy Policy.  If you access other sites using the links provided, the operators of these sites may collect information from you that will be used by them in accordance with their privacy policy, which may differ from ours. Please check such policies before you submit any personal data to the third-party websites.

ACCURACY OF COLLECTED DATA

Because the Canadian MPN Network processes personal information received from other individuals (i.e. Patients and Care Partners) it cannot assume any responsibility for the accuracy of this information.

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