NATURE OF HEALTH RESEARCH AND PERSONAL DATA INVOLVED.
The major goal of the National Kidney Disease Surveillance System (NKSSS) and Quality Assurance (QA) Programme is to provide meaningful high-quality information on the frequency of kidney disease (acute and chronic) and its complications in the Irish health system. The programme will also assess the quality of care provided to patients with kidney disease, and the effectiveness of different treatments for kidney disease. It will also help identify areas or regions where the burden of disease is high and where greater attention should be focused. It will also help identify areas of good clinical practice and areas where clinical care is sub optimal in the health system. By capturing information over several years, we can get a better picture of how common the disease is and examine whether our strategies for prevention are working.
This information will be used to assist health professionals in the strategic planning of health services for kidney disease in Ireland. With careful planning and engagement with stakeholders from several agencies: the HSE, Data Protection Office, Department of Health, and the National Renal Office, we have developed a method for securely collecting clinical information and linking it in order to track the frequency and impact of kidney disease in the health system. This is done at the DCC at the University of Limerick.
The data subjects are members of the general population who receive healthcare in the Irish health system. A patient is included if they have a renal panel conducted which is a collection of measurements that provide multi-faceted information about the health of the kidneys. The principal use of the data collected by the NKDSS and QA Programme is surveillance of kidney disease and its clinical impact in the Irish Healthcare system. Data subjects can expect their data to be accessed and processed by a limited select group of approved individuals who will link and anonymise data prior to any analysis
The National Kidney Disease Surveillance System (NKDSS) and Quality Assurance (QA) Programme collects information from Laboratory Information Systems, dialysis registers, the Hospital In-Patient Enquiry Scheme (HIPE) and National Mortality data to provide a more complete profile of the patient’s health status through the Irish Health system.
More information on type of personal data can be found here
Under the General Data Protection Regulation (GDPR), you have rights regarding how your personal data is collected and processed. These rights include:
However, there are some restrictions to these rights in relation to personal data held by the NKDSS and QA programmes. Due to the secure nature of data collection for NKDSS, it may not always be possible to identify data related to specific individuals, which may restrict our ability to act on your request. Furthermore, your personal data may still be included in future imports from datasets like Laboratory Information Systems or the Hospital In-Patient Inquiry Scheme.
In some cases, we may not be able to delete or restrict the processing of your data if doing so would seriously impair the objectives of the NKDSS and QA programmes. If you have any questions or concerns, feel free to contact us via our contact page or by emailing dataprotection@ul.ie.
If you wish to exercise any of your rights, you can contact us via our contact page or email us at dataprotection@ul.ie. Additionally, if your request relates to records held by your hospital, you can use the forms available at HSE GDPR Data Requests.
Identify the Data
Before you withdraw, identify the specific data you wish to withdraw consent for.
Contact NKDSS
You can initiate your request by contacting the NKDSS through the following channels:
Confirm Your Identity
You may be asked to provide identification to ensure that you are the individual exercising your right.
Response from NKDSS
NKDSS will review your request and respond, as required by GDPR. They will either:
This is a statement of the practices of the National Kidney Disease Surveillance System (NKDSS) and Quality Assurance (QA) Programme, University of Limerick, The CERC Building, University Hospital Limerick, Limerick Ireland regarding the use of personal data shared with us for this longitudinal study and the steps taken by the University to protect your privacy. The University fully respects your right to privacy and actively seeks to protect your privacy rights. Any personal information collected by the University as part of this health surveillance programme will be treated with the highest standards of security and confidentiality, in accordance with Irish and European Data Protection legislation. The privacy notice explains the following:
The full privacy notice is available here
The MoU between Central Statistics Office and National Kidney Disease Surveillance System signed in 2022, has been agreed between the CSO and NKDSS in relation to the Provision of Mortality Information to support the Kidney Disease Surveillance Programme.