What research is it acceptable to do with NHS data without seeking permission from individual patients?

Many thanks for taking the time to look at this website. On this page are some details of a new research study we are planning and a video explaining some of the methods we are planning to use. Below the video is a link to some questions. We want to find out if the way we are planning to perform this research is acceptable to the public and, in particular, men who have been screened for AAA in the NHS. We would be very grateful if you could take the time to watch the video and answer the questions below the video. The video lasts just over 6 minutes. If you would rather read about the proposed project rather than watch the video a text description is available here. Additional information about how we will protect personal data in this research is also given in the written description of the project.

There are 3 sections of this web page:

Introduction

Video

Questions

 

Introduction:

In one of our proposed future research projects, the Virtual Aneurysm Screening Study, we are proposing to use data gathered by various NHS organizations, transfer this data to the University of Leicester and join it together.

In this research we will analyse the results of the NHS AAA Screening Programme from the last 6 years. General practice, hospital and mortality (death) records will be obtained for each man invited for screening using a process that ensures all men remain anonymous to the research team. By combining the results of AAA screening with this other NHS data, we will work out what would have happened if only men identified as smokers had been invited for AAA screening. This work will be extended to see if there are other risk factors in general practice records that can be used to identify men at high, or low risk of AAA. This information will be used to see if AAA screening can be targeted at groups of men who are at a high risk of having an AAA and, if so, whether such a targeted screening programme will still identify the majority of men with AAAs.

 

Now please watch this video:

 

 

 

Questions:

As stated in the video above the main question we want people to consider is whether it is acceptable to use information gathered by the NHS for research purposes without seeking consent from every individual patient concerned. In this research we have devised a process that ensures that the research team will not know the identity of the people involved in the research.

Please click here to go to the questions we want you to consider.

 

What happens to the information we collect in the questionnaire on this website?

In this questionnaire we are not collecting any personal details that would allow us to identify you or contact you. All we are collecting is your anonymous answers to the questions. If you would like any further information before completing this survey please contact Matt Bown (m.bown@le.ac.uk).

Further details:

  • The purpose of running this survey is to find out if members of the public think our proposed research methods are acceptable or not. If the majority of people think our plans are acceptable we will apply for permission to carry out this research from the Health Research Authority and use the summary results from the survey to support this application. If the majority of people don't think our plans are acceptable we will re-design our research proposal.
  • The data collected in this survey will only be used for the above purpose and will not be made publicly available. The data will not be shared with anyone outside of Professor Bown's research team at the University of Leicester.
  • The data collected in this survey will be stored on the secure computer system at the University of Leicester.
  • Data collected in this survey will be stored for one year at most.
  • If you have concerns about this data collection please contact the University of Leicester Information Assurance Services, University of Leicester, University Road, Leicester, LE1 7RH. Telephone: +44 (0)116 229 7945 or email: ias@le.ac.uk

 

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