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Privacy notice for the National Paediatric Diabetes Audit

Why are we collecting data for the NPDA audit?  

HQIP has commissioned RCPCH to carry out the National Paediatric Diabetes Audit (NPDA). The purpose of the audit is to monitor the number of different types of diabetes amongst children and young people on a national level and monitor and compare the quality of care received and outcomes achieved by children and young people receiving care from different paediatric diabetes units and regions. This will lead to an improvement in the care provided to children with diabetes, their outcomes and the experiences of patients and families. 

To carry out this audit on behalf of HQIP, the data controller, RCPCH is collecting patient data submitted by paediatric diabetes units (PDUs) relating to completion of recommended health checks performed for the children and young people receiving care from their service, as well as the results of these health checks. The full dataset collected can be viewed here.  The data that is collected is held on a secure server which meets all data protection legislative requirements and is hosted with the EU.

The NPDA has section 251 approval to collect patient identifiable data without explicit patient consent as its aims are considered to be in the public interest, as the audit will help improve standards of paediatric diabetes care. We do this whilst also protecting your privacy rights and providing you with the option to opt out.

To find out more about section 251 approval, visit the Health Research Authority  website. However, patients do have the right to opt out of their data being used for the audit. If patients wish to opt out, they should do so by contacting their paediatric diabetes team to ask that their data is not submitted to the NPDA. They can also contact HQIP or the NPDA team at npda@rcpch.ac.uk to ask that their data be deleted if it has already been submitted.

Participation in this audit is mandatory for all hospitals in England receiving Diabetes Best Practice Tariff payments and mandatory in Wales as per the NHS Wales National Clinical Audit and Outcome Review Plan 2015-2016. Your information is important as, without this data, HQIP would not be able to conduct this audit which would make it difficult to make improvements in paediatric diabetes care. 

Information we share   

Sometimes the data will be shared with third parties for the purpose of service evaluation by external academic researchers. Data will only ever be shared in a pseudonymised format and only with the approval of HQIP. For HQIP to approve the request, the requestor must be able to demonstrate compliance with stringent data protection policies and arrangements and the aims of the research must be approved, as per HQIP’s guidance to applicants. Personal data shall not be transferred to a country or territory outside the EEA unless that country or territory ensures an adequate level of protection for the rights and freedoms of data subjects in relation to the processing of personal data.

NPDA data will also be linked to Hospital Episodes and Statistics data produced by NHS digital and the Patient Episodes for Wales data supplied by the NWIS in order for the audit to produce reports on diabetes-related hospitalisation of children and young people. This involves the flow of patient identifiable data to these trusted third parties.  If patients or their parents do not wish to have their data submitted to the audit by their clinic, they should instruct their diabetes team not to include this in their annual submission to the NPDA team. An annual audit report is published which is available publicly via our website and via data.gov.uk. All data is reported at the level of individual paediatric diabetes units so that no patient identifiable data will ever be published.   

How long do you keep my data for? 

The NPDA team at the RCPCH acts as the data processor on behalf of HQIP, who are the data controllers for the NPDA data. The RCPCH will hold the NPDA data for as long as it is contracted to deliver the NPDA. The current contract ends in May 2010.  All data will be deleted or transferred back to HQIP within two weeks of the end of this contract.

Accessing and updating your personal information

You have the right to opt out of your data being submitted or to restrict the processing of your personal data. Under data protection legislation, you also have a right to request the erasure or rectification of your data where you believe it is inaccurate. As the hospital units provide RCPCH with the data, please contact a member of your diabetes team if you do not want your data to be submitted. Please contact the NPDA at npda@rcpch.ac.uk about previously submitted data if you want to action any of these rights.  All requests to access the data should be sent directly to the data controller, communications@hqip.org.uk. Any access requests received by RCPCH will be forwarded to HQIP. 

Changes to our privacy policy 

This privacy policy was last updated in December 2017.   

Further information and how to contact us 

If you have any questions or concerns about how your information being shared for the purposes of the audit, please contact your diabetes team first. 

HQIP are the data controllers of this audit and can also be contacted if you have any questions or concerns how your information is being used for the audit: communications@hqip.org.uk 

You do also have the right to lodge a complaint with the ICO if you have concerns about the way you/your child’s personal data is being handled: casework@ico.org.uk. 

Royal College of Paediatrics and Child Health
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