Patient Information Leaflet – UKRETS Fair Processing Statement
The United Kingdom Registry of Endocrine and Thyroid Surgery (UKRETS) – Information for Patients
What is Clinical Audit?
Clinical audit is a quality improvement cycle that involves the measurement of the effectiveness of healthcare against agreed / proven high quality standards and brings practice in line with these standards, so as to improve the quality of healthcare and health outcomes. It is an important process to enable healthcare providers to monitor the quality of care they provide against explicit high standards and modify this where necessary. It is therefore a constant, dynamic process that ensures high quality standards of care through a transparent responsibility and accountability for these standards. Essentially it asks the questions what should we be doing, are we doing it right and how can we improve?
Clinical audit can be used to assess three aspects of patient care (structure, process and outcome). Structure is what a service needs to provide a safe service e.g. the availability of on- call consultants to deal with post-operative problems; process is what we do to deliver this service e.g. whether suspected thyroid cancer patients are seen promptly in outpatient clinics; and outcome is a measure used to determine the quality of this process, such as the number of patients taken back to theatre following thyroid surgery for post-operative bleeding.
What is the United Kingdom Registry of Endocrine and Thyroid Surgery (UKRETS)?
Formerly known as the British Association of Endocrine and Thyroid Surgeons (BAETS) Audit, UKRETS is the Thyroid and Endocrine Surgery Audit for the United Kingdom which was set up in 2004 and run by the British Association of Endocrine and Thyroid Surgeons (BAETS). It was established with the aim of improving the quality of services and outcomes for patients undergoing endocrine surgical operations. BAETS collects information on the outcomes from thyroid, parathyroid, adrenal and endocrine pancreatic surgery. Currently there are > 100,000 entries in the UKRETS database.
The data from UKRETS is analysed and published anonymously in a national report, now in its 5th edition in 2017. This report sets out the extent of endocrine surgery undertaken by BAETS members in the UK as well as detailed information on investigations, pathology, operative details and surgical outcomes. This provides valuable information on the quality and safety of surgical outcomes, trends in the management of surgical endocrine disease and provides a national standard, against which BAETS members can compare to their own practice. This helps drive up standards and improve outcomes for patients undergoing endocrine surgical operations.
What does UKRETS measure?
UKRETS collects data on the number of endocrine surgical operations, including indications for surgery, results of pre-operative biopsies and scans, extent of surgical operations, intra- operative surgical adjuncts used, pathology details, post-operative complications, length of stay, re-admission rates, mortality, and long-term outcomes such as hypocalcaemia and voice change following neck surgery. Data on outcomes, such as hypocalcaemia following thyroidectomy, are also displayed in funnel plots in the Annual Reports, with confidence intervals to indicate surgeons whose results are outliers from the national average.
Who manages UKRETS?
UKRETS was set up by Dendrite Clinical Systems Ltd (data processor) for the British Association of Thyroid and Endocrine Surgeons (data controller) in 2004. BAETS members from throughout the United Kingdom submit data on patients undergoing thyroid, parathyroid, adrenal and pancreatic endocrine surgical operations to UKRETS. All data collected is subject to strict rules of confidentiality and data protection, and securely stored by Dendrite Clinical Systems Ltd so that patients do not need to worry about it getting into the wrong hands.
How is UKRETS data processed?
The consultant providing your care will securely input information from your operation into UKRETS via password protected access to the BAETS national audit. This is securely transferred to and stored by Dendrite Clinical Systems Ltd. Dendrite therefore act as guardians for your data. Your date of birth, gender, date of operation and discharge from hospital are currently the only patient-identifiable information recorded in UKRETS. Every three to four years Dendrite analyse this data in the national report. This data is published in a completely anonymous format, so there is no way of anyone identifying your information from this.
Consultant Outcome Publication
Every year Dendrite submits information on the outcomes from its thyroid surgical operations from a 4-year time period from UKRETS to the Healthcare Quality Improvement Programme (HQIP) which publishes these in NHS Choices. This is part of the Consultant Outcome Publication (COP) and is freely available to the public and healthcare providers. Outcomes in this report are searchable by surgeon, hospital or postcode.
Currently information published in this surgeon-specific outcome report includes number of operations, data completeness, re-operation for bleeding, re-admission rate, mortality, and length of stay. It provides a useful resource for members of the public when choosing a surgeon or hospital in which to undergo a thyroid operation as you will be able look at their results for thyroid operations to help you make decisions about your care.
You will also be able to see in the surgeon-specific outcome report how much thyroid surgery each consultant or hospital performs and their clinical outcomes compared to the national average. Where results differ significantly from the national average, there may well be good reason, and you can discuss this with your GP and/or surgeon. Click on the NHS Choices website for more details.
Who will benefit from UKRETS data?
Surgical consultants can use UKRETS and COP data to compare their own practice to their colleagues and national standards, and take steps to improve their practice if necessary. The data from UKRETS also helps is assessing consultants’ performance during the appraisal and revalidation process. Hospital managers can use this information to identify areas needing improvement and ensure that standards are being maintained in trusts around the UK.
Data from UKRETS may be used, with permission from the BAETS executive, for research projects to improve our knowledge of endocrine and thyroid surgery. Publication of research findings in peer-reviewed journals is then disseminated to a worldwide audience. This all has the effect of driving up standards in endocrine surgery for the benefit of patients and the general public who can also access the information the Consultant Outcome Publication when choosing where to have their surgery.
How reliable is the UKRETS data?
UKRETS is a large national audit and data entry is done by busy clinicians. It is therefore subject to human error and the time-constraints that clinical practice entails. Missing data rates for some items are higher than others, particularly late follow-up data, due to the greater time and effort required to update these measures. Data is also self-reported and so isn’t subject to external evaluation.
Linking data in UKRETS with information in other NHS databases is anticipated in the future to determine whether the data provided by each hospital is complete and accurate. Although UKRETS is a compulsory national audit, comparison of the number of cases submitted to UKRETS with hospital episode statistics (HES) has shown that just over half of all thyroid and parathyroid operations are currently submitted to UKRETS, and so it remains an objective of the British Association of Endocrine and Thyroid Surgeons to increase the overall proportion of endocrine surgical cases performed in the UK entered into UKRETS.
How we keep your information safe?
Data protection and privacy is an important part of UKRETS so no patient-identifiable information can be identified in the results. All data is collected and stored according to strict rules of confidentiality as laid down by the Data Protection Act 1998. UKRETS data is securely stored by Dendrite Clinical Systems Ltd.
Can I opt out of UKRETS?
Yes. When your consultant goes through the details of your operation with you in the clinic he/she will discuss data collection in UKRETS and provide you with a patient information sheet outlining what this involves. You’ll be given the option to allow your information to be recorded in UKRETS or not. If you decide to opt out of data collection, this wish will be respected and the decision recorded in your case notes.
Contact Details
British Association of Endocrine and Thyroid Surgeons, Association of Surgeons of Great Britain and Ireland, 35-43 Lincoln’s Inn Fields,
London, WC2A 3PE
