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What we do with your data (fair processing) 

Information about what data we receive from NHS Digital and how we process it
 



What information is being collected?

Data are obtained about any hospital admissions or appointments you may have had, cancers that are unrelated to your blood disorder, and death registration (where applicable).  This information comes from Hospital Episode Statistics (HES), the Office for National Statistics and Cancer Registries.

 

How are the data collected?

We send your surname, forename, gender, date of birth and NHS number, along with your YHHN study number to NHS Digital, who then link to the datasets to provide us with information about your illnesses, hospital care, cancers that are unrelated to your blood disorder, and death registration (where applicable).  This information comes from Hospital Episode Statistics (HES), the Office for National Statistics and Cancer Registries.

 

How is this information being used?

Little is known about why some people develop certain blood disorders and why people respond differently to treatment. By looking at this information, we hope to find out more about why these diseases occur and what determines response to treatment. This information may also help to improve the organisation of clinical services in the region.  Your information will only be used for research into the causes and treatment of blood disorders

 

Will the data be shared?

Only researchers at the University of York will be able to access the data, and it will not shared with any other individual or organisation.   

 

Will the information be kept confidential?

All information we hold on you is confidential and kept in accordance with the Data Protection Act. Information is processed by a restricted number of staff working on the study, all of whom have been trained in confidentiality procedures and are employed by the University of York (“the data controller”).  All participants are given a code number and this is used to anonymously link information from your medical records. This means no one will be able to trace or identify you from the data.

 

How are the data stored?

Data are held in a secure database and our security policies are approved under the NHS Information Governance Toolkit

 

What and who is the data controller?

A data controller is an organisation that has full authority to decide how and why personal data is to be processed, this includes using, storing and deleting the data. The University of York is the data controller for this study.

 

How long will the data be stored?

YHHN is a long-term research project and there is currently no planned end-date, but NHS Digital review our access and use of the data on an annual basis.  At the end of the study, all data will be disposed of securely and in accordance with applicable regulations. 

 

What permissions do you have to collect the data?

We work with the clinical teams that are responsible for the care of patients with blood disorders in the region to inform all patients of the project. An information pack is either given or sent to each patient and we ask for written consent for NHS Digital to send us information about illnesses, hospital care, cancers that are unrelated to the blood disorder, and death registration (where applicable).  Unfortunately, sometimes it is not appropriate to contact a patient to inform them about the study and, consequently, the project has been granted specific legal permission to collect information about these patients without the need to seek consent. This permission is granted through Section 251 of the NHS Act 2006 and every year this support is reviewed by the Confidentiality Advisory Group of the Health Research Authority (HRA).  

 

I do not wish you to obtain information on me - what should I do?

Please contact us and we will ensure that no information about you is sent to NHS Digital for linkage.

 

I have previously consented for my data to be used, and now wish to withdraw my consent - what should I do?

You can withdraw from any of our projects at any time without giving a reason. If you wish to do this, please contact us. Any information obtained from NHS Digital will be destroyed and we will ensure no further data are sent.