Patient notification on the use of NHS data

One of the aims of the CATFISH study is to find out if water fluoridation is cost effective.  (Does it save more money than it costs?)  In order to do this, we need to know how much money is spent on dental treatment, and how much money is spent on water fluoridation. 

We are able to get this information from the NHS Business Services Authority (NHS BSA) and NHS digital. They will give us anonymised data for all the children living in Cumbria who are the same age as the children taking part in the CATFISH study. (Regardless of whether they are taking part in the study or not). But the information they give us will be presented differently for children who are taking part in CATFISH, and those who are not.

If your child is taking part in the CATFISH study, and you have consented for us to access their dental history, the NHS BSA and NHS digital will give us a unique ID for your child alongside the information they give us on the cost/level of treatment. This will allow us to match up the new data we get from the NHS with information we already have from your child’s CATFISH dental examinations  This information will allow us work out whether or not water fluoridation is cost effective.

The NHS BSA and NHS digital also will give us information about cost of dental treatment for children who are not taking part in the CATFISH study, but this will be fully anonymised.  They will not give us a unique ID for these children. They won’t give us any information that we could use to identify individual children.  However this information will still help us to work out whether or not adding fluoride to water is cost effective. 

The NHS BSA and NHS digital are very strict about giving out information.  We will have to comply with strict rules and regulations to ensure we keep your information safe, we only use it for the intended purpose, we will never release patient identifiable information and we do not share this data outside the CATFISH team. 

Please find some additional information how data is stored and how we will use it.

Is my data secure? 

Data obtained from the NHS will be held at the University of Manchester in a secure ‘Data Safe Haven’ which is accredited to the International Standard for Information Security, ISO 27001 and ISO27002 and meets the requirements of NHS digital for storing this type of data.

More information about the Data Safe Haven can be found by clicking on this link “Data safe Haven”

How will we use this data?

The purpose of the CATFISH study is to assess both the effect and the cost of water fluoridation by comparing a group of children living in an area which has fluoride added to the water against an area which does not have fluoride added to the water.  To do this we will use the data collected as part of this study which includes questionnaires, clinical exams and data provide from when people attend the NHS for dental treatment. We will use this to compare the dental health and cost of dental treatments across the two groups. 

We will use this information in line with the laws on data protection and confidentiality which have been assessed by the Confidentiality Advisory Group. We will publish the results of this study which will have information from over 3000 people who have taken part, it will not be possible to identify anyone from these results.

Privacy notice for research participants

More information about the University’s privacy notice can be found by clicking on this link “University’s privacy notice for research participants.” 

COVID-19 update

At the moment, we are working from home due to COVID-19, and are unable to access the office phone.  If you would like to talk to us – please email or text to arrange to speak to a member of the CATFISH team. 

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