Frequently Asked Questions

Frequently Asked Questions

NATURE OF HEALTH RESEARCH AND PERSONAL DATA INVOLVED.

1. Overview

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.

Further information

2. Data We Collect

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

3. Privacy Policy

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:

  1. How we collect and use your personal data
  2. The purpose and legal basis for collecting your personal data
  3. How we store and secure personal data
  4. What are your rights

The full privacy notice is available here