Taking part in myHT Guide

This Privacy Policy outlines how Breast Cancer Foundation NZ collects, uses, stores, and shares your personal and health information for the myHT Guide program, which is a nurse-guided telehealth initiative that supports patients prescribed hormone (endocrine) therapy.

We will manage your personal and health information in accordance with both the Privacy Act 2020, Health Information Privacy Code 2020 and other relevant legislation.

Our nurses must also comply with their professional and ethical obligations of confidence. By participating in the myHT Guide programme, you consent to the collection and use of your information as described in this policy.

The myHT Guide programme is a Breast Cancer Foundation NZ nurse guided telehealth initiative designed to:

• Support adherence to hormone therapy for breast cancer patients;
• Improve patient outcomes and reduce recurrence risk;
• Identify patients at risk of non-adherence through monitoring of personal and health information, symptom tracking, and nurse-led follow-ups;
• Ensure equitable access to evidence-based care and support.

We collect your personal (information about you) and health (information about your health) information where it is necessary to carry out our program functions and support your participation in the programme, for example to:

• support and enable the provision of appropriate care and treatment
• plan for and fund health services
• monitor quality of care/treatment delivery
• maintain and improve the services we deliver including the quality of our services (for example feedback, enquiries, and other communications)
• inform you of health services that may be relevant to you.

We may use information for program evaluation or statistical purposes. When this happens, steps will be taken to make sure information is not published in a way that identifies any individuals.

You do not need to provide this information to us. However, we may not be able to effectively provide you with services or carry out our function if you do not provide us this information.

The type of information we collect includes contact details including: name, NHI, phone number, email address, and mailing address. This helps us to correctly identify you, contact you, and link your survey responses to your health profile. We also collect your ethnicity and information relevant to your health including the health service(s) you have and are accessing, symptoms and side effects, and previous medical history. We also collect consent and communication records; notes from conversations with Breast Cancer Foundation NZ nurses or clinical partners, and records of your preferences or decisions.

Information may be collected:

• Directly from you when you use one of our websites and complete an online enrolment form to through our website; or conversations with Breast Cancer Foundation NZ nurses by any other method including text email, web chat or written correspondence, or
• With your consent from your healthcare provider (e.g., referral to programme).
• From a third party who you have authorised to share your information, for example from a member of your family or whānau or from someone who is looking after you. If someone contacts us on behalf of another person, we also collect the name and contact details of the person contacting us.

At the time of enrolment, you will be informed of:

• What information was used to contact or identify you;
• The purpose of data collection;
• How the data will be handled and protected as part of the myHT Guide programme;
• Your rights including to decline, ask questions, or withdraw at any time.

We use your information to enable us to provide you with the most effective services possible.

We may use your information to:

• Make sure we can assess your needs properly. If we know something about your age, ethnicity, general health status and medications, we will be able to make a better assessment of your condition when you describe your symptoms to us.
• We use it to match your previous records and visits to our services, if you have contacted us more than once or used another of the services we provide. You may not be able to remember all the details of your last contact, and we may be able to look up information that is relevant to the problem you currently have.
• Contact you about programme activities and support services;
• Support you through nurse-guided check-ins and symptom tracking;
• Monitor treatment-related side effects and medication adherence;
• Improve programme delivery through analysis of de-identified data;
• Ensure that services are inclusive, effective, and equitable.

Your identifiable information will not be shared with third parties unless:

• You provide explicit consent (e.g., to share information with your oncology team);
• Sharing is required by law (e.g. a court order);
• There is a serious and immediate risk to your health or safety.

We may use de-identified data (information that cannot identify you) to:

• Evaluate and improve services;
• Contribute to public health research and national breast cancer strategies;
• Report on overall programme effectiveness.

De-identified data is processed in accordance with privacy and data security standards.

We may share your information with other healthcare professionals and agencies involved in your care and treatment. It is normal practice to give necessary and relevant information about you to:

• your GP
• the health care professional who referred you
• your community nurse, or
• other healthcare professionals involved in your ongoing care.

Your informed consent is gathered either:

• Online, through a secure electronic consent form; or
• Verbally, during a phone consultation with a Breast Cancer Foundation NZ nurse (with a record of your decision securely stored).

For participants under the age of 16, consent from a parent or legal guardian is required before participation.

You can withdraw your consent at any time by contacting us.

Under the Privacy Act 2020, you have the right to:

• Request access to your personal health information;
• Ask for corrections or submit a written statement if you believe your information is inaccurate;
• Be informed if your data is being used in new ways;
• Withdraw from the programme at any time.

To make a request, contact us:

📞 Phone: (09) 304 0766

📧 Email: info@bcf.org.nz

We aim to respond to all requests within 20 working days.

We take reasonable steps to ensure your personal and health information is protected against loss, unauthorised access, use, modification, disclosure, or other misuse.

Breast Cancer Foundation NZ (BCFNZ) clinical staff (e.g. nurses) have access to your identifiable health information for the purposes of providing clinical decision making.

To ensure it is possible for the BCFNZ clinical staff to provide the best service possible it is sometimes necessary to undertake quality assurance and monitoring of our services. Therefore, staff responsible for training, monitoring and improving the quality of our services, undertaking audits, or investigating and managing complaints, may access and use your information for these purposes.

• Your health records are retained for at least 10 years from the date of your last contact with us, in accordance with the Health (Retention of Health Information) Regulations 1996.
• For minors, records are retained until age 25, or longer if clinically appropriate.
• When no longer required, records are securely destroyed in line with Ministry of Health and Te Whatu Ora guidelines.

Participation is entirely voluntary. You may:

• Decline to participate at any stage;
• Opt out of follow-up or nurse contact;
• Request removal of your information from the myHT Guide system.

You may still receive general updates or public health campaign material from Breast Cancer Foundation NZ unless you ask not to.

If we make material changes to this Privacy Policy or how your data is used, we will:

• Notify you directly (e.g., via email or phone); and
• Provide the opportunity to withdraw your consent or opt out.

The current version of the Privacy Policy is always available on the Breast Cancer Foundation website.

For questions, concerns, complaints, or feedback related to this policy or your information rights:

📞 Phone: (09) 304 0766

📧 Email: info@bcf.org.nz

📮 Post: PO Box 99650, Newmarket, Auckland 1149