Use of patient information

1. What sort of information about me is held by the NHS Diabetic Eye Screening Programme?
2. Who will see information about me?

1. What sort of information about me is held by the NHS Diabetic Eye Screening Programme?

The only information that the programme will have about you initially will be your name, date of birth, contact details, NHS number, details of your GP, information to help establish your preferred language and contact method and whether you might need large print documents and the fact that you have been diagnosed as having Type 1 or Type 2 diabetes.

Once you agree to have your eyes screened it will be necessary to check the results of any previous screening event. The programme might require further information about your medical history relating to diabetes (such as your blood sugar levels, blood pressure, foot checks, smoking history etc). If you contact the programme to confirm your screening appointment it will be taken that you are consenting for that sort of data to be given to those involved in your screening and assessment.

If you do not wish this information to be passed to the programme then you should let the programme staff know when confirming your appointment for screening. This will not prevent you from being screened but would mean staff are less able to assess your case as carefully.

2. Who will see information about me?

Your information will be seen by:

Those involved in the administration of the programme (normally based in a Primary Care Trust or hospital).
Those who carry out the screening process (including putting in the eye drops, checking vision, taking your history, taking photographs of your eyes and grading the photographs). These are either staff employed by the Primary Care Trust, acute trust or other NHS body OR are optometrists, self-employed ophthalmologists or staff employed by independent companies. The programme will provide you with a list of non-NHS personnel and companies if you are concerned in any way about who will see information about you. You should let the programme staff know if you have any particular concerns about any particular individual or company.

If your case is referred to the hospital for further assessment the information about you will be forwarded to the hospital so that those who will be looking after your case can have as much information about your history as possible.

In order to make sure that the programme operates effectively, from time to time its work is assessed by clinical auditors and others involved in quality assurance. They may need to have access to your data. In addition, efforts will be made nationally to carry out research using fully anonymised data to try to identify as precisely as possible how best diabetes should be managed in the long term (some examples may be how many people have diabetic retinopathy in any area or how quickly it progresses in different groups of people). Any efforts to use any identifiable information would result in the programme working with the Patient Information Advisory Group to make sure that all necessary agreements are obtained.

Occasionally problems may occur in the software which is necessary to support the programme. Normally the software supplier will not need to see any information that is identified to a specific individual, but occasionally it may become necessary to supply basic information to ensure that the correct information is maintained by the programme securely. Software suppliers who work with the NHS are bound by requirements of confidentiality and should be supervised by NHS staff if they need to look at information that is linked to a named individual.

Your results and screening information will be sent to your GP.