FAQs

Frequenctly Asked Questions

How can I get in contact with the research team?

If you would like to get in touch with the research team please contact the project manager, Dr Kathleen Wright (e-mail: k.e.wright@leeds.ac.uk; Tel: 0113 3430365), who can answer queries or put you in contact with the most suitable person.


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What do I do if I have a concern over the study?

If you have any queries or concerns with the study please contact the project manager, Dr Kathleen Wright (e-mail: k.e.wright@leeds.ac.uk; Tel: 0113 3430365), who will respond or identify the most suitable person to contact you.


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How long will the study last?

The study will end in 2019.


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When did the study start?

Ideas for conducting this study started a few years ago, however there was a number of delays in getting started. Funding came through from Macmillan in 2015. We then applied for ethical approval for the main part of the study, which was awarded in ????. The ethical approval for the survey part of the study is underway, and we are currently waiting to hear back from the ethics committee.


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Can I make sure my data isn’t used?

Yes. Your data might be used in this study if your GP practice is in Leeds, registered for using SystemOne and also opted to be involved in ResearchOne. If you don’t want to be involved in this or any research study, then contact your GP practice and kindly ask to opt out of the ResearchOne scheme.


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Who can see my data?

Your identifiable GP-practice data can be accessed by you, your Leeds GP practice, and SystemOne/ResearchOne service provider (TPP, Leeds). The research team will not be able to view any identifiable information in this study. If chosen, your non-identifiable Leeds GP data and hospital records will be analysed by members of our Leeds Teaching Hospital NHS Trust and University of Leeds research teams. Survey responses will be analysed by the University of Leeds research team.


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Is my data safe?

Yes. The data is encrypted at source and transferred to the Integrated Research Campus – a secure research environment within the Medical Research Council Medical Bioinformatics Centre at the Leeds Institute of Data Analytics, University of Leeds. Data will remain securely in the Integrated Research Campus and only accessed by approved members of the research team and only via a two-stage authentication process. Access will only be for the purpose of the proposed research and only via a Virtual Research Environment that has no capacity for an internet connection.


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Has the project got ethical approval?

Yes. The project has been independently reviewed by an NHS Research Ethics Committee and the NHS Health Research Authority, both of whom have granted approval for the project (IRAS project ID: 188345 REC reference: 16/NE/0155). The project has also sought the opinion of the Confidentiality Advisory Group at the Health Research Authority who advised that their input was not needed as the data being used is de-identified.


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How have patients informed the design/running of the study?

Patients with experience of cancer have been involved throughout all stages of this project. This includes commenting on the project design (protocol) and preparation for ethics approval. Patients have carefully considered the risks and benefits from the use of anonymised personal health data. Patients continue active involvement through bi-monthly project steering group meetings and input into particular areas such as the quality of life PROMS research element.


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