Use of your data in research- New UK data protection law

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This post is intended for all the participants of the study; Scaling the Peaks. If you have taken part in the study then please read this notice. No further action is required.

It is necessary to distribute this additional information as a requirement of the New UK Data Protection Law.

Thank you for your time.

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Use of Your Data in research – New UK Data Protection Law

Scaling the Peaks 2015-19

IRAS number: 188103

As a participant in a research study sponsored by the University of Nottingham we are providing you with some additional information about the use of your personal data, which is data from which you can be identified, as a new law for data protection has been introduced.

Your information will be kept strictly confidential, stored in a secure and locked office, and on a password protected database at the University of Nottingham.  Under UK Data Protection laws the University is the Data Controller (legally responsible for the data security) and the Chief Investigator of this study (named above) is the Data Custodian (manages access to the data). This means we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited as we need to manage your information in specific ways to comply with certain laws and for the research to be reliable and accurate. To safeguard your rights we will use the minimum personally – identifiable information possible.

You can find out more about how we use your information and to read our privacy notice at:

https://www.nottingham.ac.uk/utilities/privacy.aspx

The data collected for the study will be looked at and stored by authorised persons from the University of Nottingham who are organising the research. They may also be looked at by authorised people from regulatory organisations to check that the study is being carried out correctly. All will have a duty of confidentiality to you as a research participant and we will do our best to meet this duty.

Where possible information about you which leaves your home will have your name and address removed and a unique code will be used so that you cannot be recognised from it, however sometimes we need to ensure that we can recognise you to link the research data with your medical records so in these instances we will need to know your name and date of birth.  We will also need this information if we need to follow up your medical records as part of the research, where we may need to ask the Government services that hold medical information about you (such as NHS Digital, the Office for National Statistics, among others) to provide this information to us. This study, Scaling the Peaks, will not collect date of birth, so it cannot be linked with medical records.  By signing the consent form you agree to the above.

Your contact information will be kept by the University of Nottingham for 1 year  after the end of the study so that we are able to contact you about the findings of the study and possible follow-up studies  (unless you advise us that you do not wish to be contacted). This information will be kept separately from the research data collected and only those who need to will have access to it.  All other data (research data) will be kept securely for 7 years.  After this time your data will be disposed of securely.  During this time all precautions will be taken by all those involved to maintain your confidentiality, only members of the research team given permission by the data custodian will have access to your personal data.

In accordance with the University of Nottingham’s, the Government’s and our funders’ policies we may share our research data with researchers in other Universities and organisations, including those in other countries, for research in health and social care. Sharing research data is important to allow peer scrutiny, re-use (and therefore avoiding duplication of research) and to understand the bigger picture in particular areas of research. Data sharing in this way is usually anonymised (so that you could not be identified) but if we need to share identifiable information we will seek your consent for this and ensure it is secure. You will be made aware then if the data is to be shared with countries whose data protection laws differ to those of the UK and how we will protect your confidentiality.

What will happen if I don’t want to carry on with the study?

Your participation is voluntary and you are free to withdraw at any time, without giving any reason, and without your legal rights being affected. If you withdraw we will no longer collect any information about you or from you but we will keep the information about you that we have already obtained as we are not allowed to tamper with study records and this information may have already been used in some analyses and may still be used in the final study analyses. To safeguard your rights, we will use the minimum personally-identifiable information possible.

 

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