Data relating to Congenital Heart procedures is collected and managed by the National Institute of Cardiovascular Outcomes Research (NICOR). This research unit is based at University College London.
This audit was previously been known as CCAD but has recently been renamed the National Congenital Heart Disease Audit (NCHDA) All hospitals who perform surgery and invasive catheter procedures on children with heart conditions are required to submit data every year for inclusion in a UK wide outcome’s database. Data sent from the Evelina London is sent via a secure NHS network and all of the data is encrypted.
The data analysis of the information allows individual hospitals and doctors to compare procedure outcomes against other units in the UK this should enable good or poor practice to be identified and appropriate action taken. The collective information for each unit and procedure group is presented on the NICOR congenital audit webpage. It is important that you read and understand the information and how it is presented on the webpage How to interpret the data.
In order to ensure that hospitals are submitting all of their data and that it is accurate the national audit team carry out annual data validation visits to each unit. This means a visiting consultant and the audit nurse will review a random selection of notes (usually 20) for data accuracy, they do this by comparing the entries in the notes against the data submitted. The second part of the validation visit is a complete check of the theatre log books to ensure there are no cases missed.
All of the data seen and reviewed is treated in accordance with NHS confidentiality rules and the validation visit is overseen by Thomas Witter & Rhian Brimmell, Clinical Nurse Specialists and Dr Aaron Bell, Consultant. As they are visiting professionals you will be asked for consent to allow them to review your child’s records, you may if you wish, refuse consent for your child’s notes to be included in the validation process.
For a fuller explanation written by the Paediatric Cardiology team please read their information sheet. If you have any queries related to the NICOR website, the data it contains or the consent required to submit patient’s data please call Thomas Witter or Rhian Brimmell on 02071884554.