Personal Data

NOAR collects personal data about you and we need to be fair, transparent and honest with you about what we do with the data.

In order to participate in the NOAR study we will need to collect information that directly identifies you, called personal data. Specifically we will need to collect your:

• Name
• Contact details i.e. home address, telephone number and email address (to allow the study team to contact you for follow up questionnaires and to let you know about other research if you have indicated that you’d like to receive information about future studies).
• NHS number (to allow the study team to store samples as well as to link data about you from different sources such as the questionnaire data with data obtained from NHS Digital (if you have provided permission for such linkage).

Data that directly identifies you will be kept separately from your research data, and only accessed by those that need access to it.

Research data collected about you includes the:

1. Data we collect from you, that is, your questionnaire data.
2. Data we obtain from your medical records, we refer to this data as clinical data.
3. Data we obtain from NHS Digital if you provide permission for access, NHS Digital data.
4. A Blood sample, DNA and genetic data as well as results from analysis of DNA and genetic data, if you provide a blood sample and permission to extract information from it.

When storing research data we will remove information that directly identifies you and replace it with a unique NOAR study ID. The research data along with study ID’s will then be stored separately to the information we hold on you that directly identifies you. This process is called pseudonymisation.

Please see our privacy notice for full details of the data held by NOAR, what it is used for and who can access it.

Support under Regulation 5 of the Control of Patient Information (COPI) Regulations (section 251 support) is in place for the NOAR research team to process confidential patient information without consent for the following purposes:

• access confidential patient information to check the eligibility of newly diagnosed patients and make contact to seek consent to be involved in the Register.
• obtain information about hospital admissions (morbidity data) and information about deaths (mortality data) from NHS Digital for all NOAR participants who have died or whom (for whatever reason)contact with the study has not been maintained. This may be due to participants moving out of the area or not responding to survey requests.
• obtain morbidity and mortality information from NHS Digital for all NOAR participants whose consent did not give permission for NOAR to collect the NHS Digital data.

NHS Digital is the national information and technology partner for the health and care system. Their systems and information help doctors, nurses and other health care professionals improve efficiency and make care safer. NHS Digital provide morbidity and mortality data for the NOAR research which enables us to identify which patients have died and/or developed certain important comorbidities (e.g. cardiovascular disease, lung disorders, and certain types of cancer).

If you have not explicitly consented for NOAR to collect morbidity data, then you may request that your Hospital Episode Statistics (HES) data is not made available to the research by contacting noar@uea.ac.uk .

For more information ​about Section 251 please click here.