As a practice we are keen to take part in medical research, as it may further our understanding and help with medical developments in the long term. We never do this in isolation, but take part in research projects, which are being organised nationally. They usually involve something quite specific, like testing the urine in an unwell child or taking further details from somebody with a cough. If there is a situation in which your data is used and is traceable to yourself then consent is sought. You never have to agree to something unless you want to.
National Diabetes Audit: how your information is used to help improve diabetes care
Your diabetes service is taking part in the National Diabetes Audit (NDA). The NDA checks whether people with diabetes are getting good care.
The NDA collects information about diabetes care from GP practices and hospitals. The information helps the NHS to improve care. The use of NDA information is controlled by law and strict rules of confidentiality.
The NDA is managed by NHS Digital (formerly known as the Health and Social Care Information Centre (HSCIC)), working with Diabetes UK and Public Health England.
Taking part in the NDA can help improve understanding of the quality of care for people with diabetes. But you can choose not to take part if you have concerns.
What information about you is collected?
The NDA only uses information about your diabetes care that is already recorded. For example, type of diabetes, latest blood pressure result and results of HbA1c results. The NDA is not a research project. No extra blood tests, appointments or scans are needed.
The NDA collects information on
- How many people with diabetes are registered at the GP practice or clinic
- Whether people with diabetes are receiving the annual healthcare checks
- Whether people with diabetes achieve the national targets for glucose control, blood pressure and cholesterol
- Whether people with diabetes with a learning disability receive the same level of care
- Whether people with diabetes who have a sever and enduring mental health problem receive the same level of care
- How many people use an insulin pump, why they use a pump and how well it is working
Your NHS number (everyone has a unique number that is used by the NHS), date of birth and postcode are also collected. Your name and address are not collected.
The type of information used in the Audit is listed on the NHS Digital website at digital.nhs.uk/data-and-information/clinical-audits-and-registries/national-diabetes-audit
How is this information used
To get a complete picture of diabetes care, we will also link this information to other health information.
NHS Digital will use your NHS number and date of birth to link information that is collected from your GP practice, or diabetes clinic, to other information recorded by the NHS Digital relating to your diabetes care.
Specifically, the information is linked to:
- The Hospital Episode Statistics database for England or Patient Episode Database if you live in Wales, which includes information on any outpatient appointments, visit to A&E and other hospital admissions. This will help us understand how many people with diabetes develop health problems, such as heart disease or stroke.
- A national register of deaths collected by the Office for National Statistics (ONS). This will give us information about the people who have died.
- Other diabetes audits, such as the National Paediatric Diabetes Audit, the National Pregnancy in Diabetes Audit and the National Diabetes Footcare Audit. This will help us provide a detailed picture of the care received by people with diabetes across different health services.
Once your information has been linked, your NHS number and date of birth are removed. So, all your information is then anonymised.
The information about you is studied along with the information from all other diabetes services in England and Wales. We produce national and local reports, including one for each GP practice and diabetes service. Reports never identify individuals.
All the reports are available on the NDA website. An easy read summary report is also available from Diabetes UK’s website: digital.nhs.uk/data-and-information/clinical-audits-and-registries/national-diabetes-audit
How will your information be kept safe
There are very strict rules about what happens to your information. NHS Digital has special legal permission to handle individual patient Data for clinical audits. They must keep to very strict security and confidentiality standards and follow the laws on the protection of personal data.
Information about individuals is available only to a very small number of specially restricted staff at NHS Digital. They use a secure, password protected system to look at and analyse the information.
NDA data may be shared for research purposes. But only if this is allowed by law and meets the strict rules that are in place to protect your privacy.
Information that is collected by the NDA will never be passed on or sold onto organisations that could profit from it.
Saying ‘no thanks’
If you do not want your information to be used, please inform the receptionist, your GP or nurse. They will make sure that this is noted on your medical records, so your information is not included. This will not affect your care in any way.
If you would liked more information about the National Diabetes Audit, ask your Doctor or nurse.
Telephone: 0300 303 5678
Address: Clinical Audits & Registries
1 Trevelyan Square