Your bowel screening records
When you participate in the National Bowel Screening Programme (NBSP), your bowel screening test result will be stored on the NBSP Bowel Screening Register. This ensures you get your reminders and any follow-up you need. If you require a further investigation and have a publicly funded colonoscopy, information from your colonoscopy will be stored in a centralised database called the Provation Centralised Database. This database is used for all endoscopy examinations. Information from the Provation Centralised Database will be used to update the Bowel Screening Register. The Bowel Screening Register stores:
- all your test results
- information on any assessment or treatment you have received
- your next reminder date
- your NHI number (National Health Index number)
- other information included on your consent form: date of birth, gender, ethnicity, GP details (if known), address and contact information.
Protecting your privacy
When you join the National Bowel Screening Programme we will keep your information secure and only use it for purposes related to the screening programme. Your privacy and confidentiality will be respected throughout.
We will hold your personal information in accordance with the Privacy Act 2020. The Privacy Act 2020 regulates us through the Information Privacy Principles as to how we collect, use, hold, disclose, access, correct, manage and dispose of your personal information. For more information visit the Office of the Privacy Commissioner (link is external).
The purposes your information may be used is to:
- contact you when you are due to be invited for screening
- send you a bowel screening test kit
- advise you of your test result
- managing your pathway through the screening system
- record the result of your test and any recommended further investigations
- advising your GP (if known) and DHB of your test result. We will not contact your GP if you tell us not to, unless it is considered necessary for the management of your healthcare
- advise other health professionals involved in your care of your test result, indicating if your result shows you may need further medical treatment or tests
- plan for national and regional services
- evaluate and monitor the programme
- educate service providers working with the programme and
- health research approved by an ethics committee to check the programme is working well and to help make improvements.
Privacy Statement for the National Bowel Screening Register (the Register)
The Ministry of Health is supporting a national clinical record system (the Register) to support the National Bowel Screening Programme (the programme). This is what happens to your information if you join the programme.
What the information is used for
You can choose to join in the programme. If you do join, we will keep your information secure and only use it for purposes related to the programme. The purposes include:
- Contacting you, and your general practitioner (your GP) if we know who they are, when you are due for a test or need a follow up appointment.
- Managing your pathway through the screening system including recording results of your tests and advising you, your GP and your DHB.
- Advising other health professionals involved in your care if your test results indicate you may need further medical treatment or tests.
- Planning for national and regional services, evaluating and monitoring the programme, educating service providers working with the programme, to check the programme is working well and to help make improvements. Health research approved by an ethics committee. No reports or research produced will identify any individual.
Where the information is held
The programme is managed by the National Screening Unit of the Ministry of Health. The programme will store your contact details and test results on its secure internet-based record system so it can provide ongoing screening services for you, and enable those involved in your care to access those records when required. The programme records will be held in accordance with the Health (Retention of Health Information) Regulations. In order to host the Register we use Amazon Web Services located in Sydney Australia.
The information collected about you
We already hold information about your name and age, and the GP you are enrolled with. We use this information to identify when you are eligible to be invited to participate in the Programme, to make contact with you and to identify the GP who provides care to you.
Information will be collected from you, and from the health professionals involved in your care as follows:
- The consent form and the completed test you post to the laboratory.
- The laboratory will complete your test and send the results to the programme and to your GP (we will not tell your GP the results if you tell us not to).
- Your health professionals will be directly responsible for your clinical care.
- If your test result shows that you might need to do some further tests your GP or local DHB will contact you to arrange for those tests and you can talk with them about any questions you have. The results of these tests and treatment will be included in our records.
The information collected about you
The following people might access your information and will be subject to strict confidentiality obligations:
- The health professionals who are involved in your care, including your GP, and DHB staff.
- Your DHB and its regional coordination centre
- The national coordination centre (Whakarongorau) staff to keep in contact with you, update your details and monitor your pathway. Some DHBs may also have outreach staff if they have been unable to locate you.
- The Ministry of Health National Screening Unit
- Your Primary Health Organisation
- Any authorised researchers (any research produced will not identify any individuals).
How long are your records kept
Your healthcare provider will hold records about you as required by the Health (Retention of Health Information) Regulations 1996.
The records in the Register will be retained indefinitely for the following reasons:
- There are people who want to see what information has ever been collected about them. Information stored about a particular person may still have relevance to them and their descendants in the future.
- For research and statistical purposes. The information in the Register will be valuable in regard to research, particularly in terms of long term trends, population comparisons and health equity. This access for statistical and research purposes will not be published in a form that could reasonably be expected to identify the individual concerned.
If you want to opt off the programme at any time you can call free phone 0800 924 432
If you want to access any information held about you, or to correct any information call the free phone number or email firstname.lastname@example.org. We may require proof of your identity before being able to provide you with any personal information.
We comply with the Code of Health and Disability Services Consumers' Rights (the Code). The Code establishes your rights as a consumer. For more information visit the Health & Disability Commissioner website. The Code is a regulation under the Health and Disability Commissioner Act.