UK Severe Asthma Registry (UKSAR) –Dendrite Privacy Notice

What is UKSAR?

The UKSAR is a database in the United Kingdom for adult patients referred with severe and difficult to control asthma to Specialist NHS clinics for assessment and treatment. The information in the database will be used to assess and improve the quality of services and the outcomes achieved by severe asthma treatments across the NHS. It may also provide comparative information to commissioners to help design and deliver services.

Who manages UKSAR?

UKSAR is managed by Queens University Belfast and works in partnership with NHS England and Dendrite Clinical Systems Ltd, our technology partner.

What does UKSAR measure?

UKSAR will collect information from Specialist Asthma NHS Services within the UK that assess and manage adult patients with severe and difficult to control asthma. This will allow us to assess the quality of care relating to:

• Service delivery and organisation
• Characteristics of newly assessed severe asthma
• Assessment and management of comorbidities
• Treatments received and treatment outcomes
• Complications and side effects of treatment

How is UKSAR data processed?

Patient data is collected by the doctors, nurses, and hospital staff treating and managing the patient which is entered into or uploaded to a database developed by Dendrite Clinical Systems Ltd hosted on a single secure database server under contract with Dendrite Clinical Systems Ltd.  Hospitals have the option of entering information directly into a secure Web-based UKSAR database or uploading it from their own hospital system. During any data transfer from the hospital the information is encrypted (locked) to ensure it cannot be interfered with. Only an approved member of staff at the hospital can load the data onto the UKSAR. Once the records have been entered they can be reviewed or edited by authorised staff at the hospital using an approved user account with a secure password.

The information collected is valuable as it allows clinicians to understand the nature of severe asthma, the profile of patients and the results that are being achieved by hospitals around the country with new treatments. The data will be analysed by Queens University Belfast under the guidance of the Steering Committee of UKSAR which is made up of the Clinical Lead Physicians of UK Severe Asthma Regional Networks.

All data which is analysed is anonymised and no details of individual patients will be presented but results will be reported for groups of patients. These may be broken down by region or hospital, and by other important information that may be related to outcomes such as age and general health status.

The data may be shared with trusted third parties as part of a Research Project. Data would only be released for commercial purposes if there are direct treatment benefits for patients with severe asthma and with the approval of the Steering Committee and if all ethical requirements have been met.

Who will benefit from UKSAR data?

UKSAR Stakeholders - staff, patients, carers and managers will be able to see UKSAR outcome reports to assess clinical outcome. The data will be used to help commissioners, providers and doctors understand how their practice and outcomes compare to performance in other centres, to judge which treatments are of greater benefit and how care is improving, to identify different sub-groups of severe asthma and trial new severe asthma therapies and to provide information for planning future services for people with severe asthma. The data will also facilitate assessment of how closely local practice aligns to NICE guidelines.

The new information collected by UKSAR will also help to define, add to and refine existing quality standards.

UKSAR data may be shared for research purposes but does not identify individual patients. The research will always be in line with the overall purpose of UKSAR aims, for example:

• Defining clinical outcomes with new therapies
• Publishing papers in medical journals to provide information about the best standards of care for patients with severe asthma
• Providing information for public health

How reliable is the UKSAR data?

As UKSAR is a large national database, some items are bound to be inaccurate or missing. Linking your data with information in other NHS databases, (for example the database which records who receives biologic treatments in severe asthma) may help us to check whether the data provided by each hospital is complete and accurate.

Once your information has been added to UKSAR only your clinicians will be able to access, check and change it. The UKSAR has an audit trail that keeps a record of all changes that are made.

How we keep your information safe?

Data protection and privacy is an important part of UKSAR so no individual patient names can be identified in the results.

Dendrite Clinical Systems will make sure the data collected is subject to strict rules of confidentiality as laid down by Acts of Parliament, including the Data Protection Act 2018 and the Health and Social Care Act 2001.

How long will we keep your information?

By collecting a large amount of information, it is easier to identify the most effective treatments, which can benefit patients. This can potentially change care in severe asthma so that in future patients will have a better clinical outcome and quality of life after treatment.

We will retain the UKSAR data for a period of at least 10 years to enable us to collect, assess and report on the complications and outcomes of treatments

Can I opt out of UKSAR?

You have kindly provided your consent to be included in the UKSAR. If at any time, you do not want your information to be held in UKSAR, please tell the people who are treating you. It is possible that some of your UKSAR information may already have been used for prior analyses. When the people who are treating you are informed about your decision, the team at Queens University will make sure that any UKSAR specific information will be removed from UKSAR and destroyed. This will not affect your treatment in any way.

Contact details

If you have any questions or comments about this statement, the University’s Data Protection Officer can be contacted at:

Derek Weir: Data Protection Officer

Information Compliance Unit
Lanyon South
Queen’s University Belfast
University Road
BT7 1NN
info.compliance@qub.ac.uk  

COMPLAINTS

You have the right to complain about how we treat your Personal Data and Sensitive Personal Data to the Information Commissioner’s Office (ICO). The ICO can be contacted at:

Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF