The National Screening Service (NSS) is part of the Health Service Executive (HSE). We provide free population screening services for eligible people in Ireland through our BowelScreen, BreastCheck, CervicalCheck and Diabetic RetinaScreen programmes. We need to process personal information to deliver these programmes. We are committed to ensuring the privacy and confidentiality of your personal data and will only use your data in line with the law. This Privacy Notice summarises how we handle your personal information.
You can find more information in the:
Our responsibility
We must comply with legislation when we process your personal information, including:
- the General Data Protection Regulation (GDPR)
- the Data Protection Act 2018
- the Freedom of Information Act 2014
- other relevant health legislation.
The data controller
The HSE is the data controller of your personal data that is collected and used in our screening programmes.
The HSE’s headquarters is located at:
Dr Steeven’s Hospital,
Steeven’s Lane,
Dublin 8,
D08 W2A8
Data protection officer (DPO)
The HSE’s DPO oversees compliance with data protection.
Why we need information about you
We need to create and maintain a record of your personal information:
- to invite you to take part in our screening programmes
- to provide you with a high-quality screening service
- to ensure you are directed to the appropriate healthcare services after your screening.
The record of your personal information includes:
- your personal details
- any contacts you have had with a screening programme
- information relating to your health details of any people involved in your healthcare, for example your GP
- images captured during screening process
- information about tests and investigations
- the results of any tests and investigations.
We process your personal data because we have a legitimate authority to carry out important public health work. GDPR allows us to use your information when it is necessary for work done in the public interest or when we are carrying out our official duties. We get this legitimate authority under the Health Act 2004 (as amended) and the Health (Provision of Information) Act 1997 (as amended).
Special categories of data are defined by the GDPR and include information such as your racial or ethnic origin, religious or philosophical beliefs, genetic data, biometric data, health data, sex life details and sexual orientation. The processing of special categories of personal data is permitted in limited circumstances in the GDPR.
We will only process special categories of personal data where it is necessary:
- for the purposes of preventative or occupational medicine
- for medical diagnosis
- for the provision of healthcare, treatment or social care
- for the management of health or social care systems and services, or pursuant to a contract with a health professional.
The processing of your special category data will only be carried out under the responsibility of a health practitioner or a person with an equivalent duty of confidentiality to your personal information.
Where we get your information
We have a legal responsibility to manage Ireland’s cancer screening programmes. To do this we maintain a register of eligible people to invite to screening.
We get this information from:
- Department of Social Protection
- Self-Registration
- HSE registers
- Health professionals
- National Immunisation Office
- National Cancer Registry of Ireland.
If you have diabetes, then you may be invited to take part in our Diabetic RetinaScreen programme. We will invite you where we have received information telling us that you are eligible for the programme. This information might come from you if you register yourself for screening, from your GP or from other HSE schemes such as the medical card scheme, long-term illness scheme or drug payment scheme.
You can add your contact details to our registers if you are eligible to take part in screening. You can update your contact details on the website or by contacting the relevant programme.
To make sure your personal data is up to date, we ask that you check the registers and update your details if they change. You can do this by contacting the relevant screening programme on Freephone 1800 45 45 55.
You can also do this on the following websites:
What we use your information for
To invite you to screening
We will invite you to take part in screening at specific intervals. You do not need to give your consent for us to do this.
If you do not want to be invited for screening, you can opt out by contacting us on Freephone 1800 45 45 55.
To get your agreement to take part in screening
When you take part in screening, we will explain what is involved and what data we need to collect from you so that we can complete the test. Screening is your choice and we will only complete the test if you agree to it.
Managing your healthcare
If you take part in screening, we will follow-up with you about your results and any advice we have for your healthcare and treatment. You will need to agree to any further treatment you are offered.
Managing the health service
We need to maintain an accurate record of the health service we provide to you. We will keep your screening records to allow us to meet our obligations to the wider health service. Sometimes it is necessary for us to keep certain aspects of your records for legal reasons and for public health reasons, even if you want us to delete them.
Quality Assurance and Quality Improvement
We have a responsibility to provide everyone using our services with a high-quality healthcare service, so we may use your data for quality assurance, improvement and clinical audit purposes. Where we can we anonymise your data by deleting your personal details. You do not need to consent to this as this is carried out in the public interest in the areas of public health.
We may also use your information for planning service delivery, teaching and training staff, and for investigating any complaints or concerns that you or your family might have.
Research
Health research plays an important role in the development of healthcare and our understanding of disease. All research we are involved in will comply with the Health Research Regulations. We may contact you to invite you to take part in research where we think your personal data would be useful in health research. Any participation in research using your identifiable personal data will be in line with the regulations and may need either your consent or a consent declaration from the Health Research Consent Declaration Committee. You will not be identified in any published research or results without your agreement.
Who we share your information with
We may need to share your information with other organisations to deliver on all the parts of our screening programmes and provide a high-quality service.
These include:
- your GP or local doctor
- the laboratory or testing provider carrying out your tests
- hospitals and clinics involved in your care
- the data processors that help us to deliver the screening service.
We may share your information with other parts of the HSE to ensure your healthcare records are available to support your overall healthcare.
Some of our laboratories and service providers are located outside of Ireland. If we ever need to process any of your personal data outside the EU/EEA, we will only do so where your data is properly protected. This means we will only send it to countries that the EU has formally agreed an adequate level of data protection under GDPR, or where we have put strong safeguards in place as required by GDPR.
We share personal data with the National Cancer Registry Ireland. This is a legal obligation that we are subject to.
We will not share personal data with other family members without your permission.
If we do share your information with other organisations involved in your care, we do so under formal agreements about how it will be used, and how it will be kept confidential and safe. We will not disclose your information to any other third party without your permission unless there are extenuating circumstances, for example, if the health and safety of others is at risk, or if there is a legal requirement for us to pass on information.
Opting out
You can opt-out of any screening programme at any time by contacting the screening programme(s). When you opt-out, it means we will no longer invite you to take part in screening and you will not receive any future communications from us. You can opt in again at any time by contacting the screening programme(s) if you are eligible for the screening programme.
You should discuss your screening needs with your healthcare provider before you make decisions about opting out or opting in.
If you have had a screening test and you then decide to opt out, your decision will be recorded. The information that we hold from your engagement with us up to that point will only be used where it is necessary and lawful.
Your rights
You have the right to access information we hold about you. The GDPR, the Data Protection Act 2018 and the Freedom of Information Act 2014 allow you to do this.
We primarily hold healthcare records relating to your engagement with our screening programmes. You may need to direct your request to another location if you have received a healthcare service from a hospital or private service outside of the HSE.
To access a copy of your personal healthcare records:
- under data protection legislation, email dataprotection@screeningservice.ie
- under the Freedom of Information Act 2014, email foi@screeningservice.ie
You also have the right to:
- be informed about the processing of your personal data
- access a copy of your personal data
- request rectification of your personal data where it is inaccurate
- request the erasure of your personal data in certain circumstances
- data portability (the right to get your data in a usable format)
- object to the processing of your personal data
- restrict the processing of your personal data in certain circumstances
- not be subjected to automated decision-making.
In certain cases these rights may be restricted. These will only be restricted where there is a legal basis for the restriction, such as in the general public interest in public health.
How long we hold onto your personal information
Personal data is kept in line with the HSE Record Retention Policy. Some records are kept for specific timeframes that are required by law or by good clinical practice.
Contact us
Contact our Information Governance Office to:
- ask questions about how we use your information
- exercise any of your rights
- make a complaint about how we use your information.
Email: dataprotection@screeningservice.ie
Phone: 01 865 9300
Address:
Information Governance,
National Screening Service,
King’s Inns House,
200 Parnell Street,
Dublin 1,
D01 A3Y8