ARRISA-UK Study - Information for Asthma Patients
This practice is participating in the ARRISA-UK research study, funded by the NHS’s National Institute for Health Research (NIHR).
What is the study about?
Asthma attacks hospitalise someone every 8 minutes in the UK; nearly 68,000 people are admitted to hospital because of asthma attacks every year.
The ARRISA-UK study uses a new method of identifying and responding to people who are likely to have a severe asthma attack that leads to hospitalisation. A pop-up alert will appear on the computer system whenever one of these patients makes contact with someone at the practice, for example the receptionist:
GPs, nurses, reception and other staff are trained in how to respond to these alerts. It is hoped that this will lower the number of severe asthma attacks.
The study involves over 180,000 people with asthma from 275 GP practices. Practices are randomly allocated (have a 50:50 chance) to either using the steps above or carrying on as usual. As the ARRISA-UK method is aimed at practice staff (GPs, nurses, reception and administrative staff) rather than patients directly, you may not notice any changes to the care you receive.
What does this mean for patients?
To see if the new method is effective, we need to count the number of times people are admitted to hospital for asthma in all 275 GP practices over a two year period.
We will be linking the data that is routinely collected from hospital records to that collected in GP practices. We need the help of NHS Digital to do this. Note: The researchers do not receive any data that would identify you personally. No action is required on your part.
- Each GP practice uploads asthma patient data (NHS number, date of birth and sex) to a ‘portal’ provided by Harvey Walsh Ltd using a secure NHS broadband network, so it cannot be ‘hacked’.
- NHS Digital will receive and match the data from the GP practices with the records of hospital visits that it holds for ARRISA-UK patients
- NHS Digital will remove the identifiers and send only the anonymous data to UEA
- All patient identifiable data will then be deleted.
Security and Data Protection:
- The ‘portal’ provided by Harvey Walsh Ltd can only be accessed by NHS Digital.
- Harvey Walsh Ltd is a NHS trusted company, already contracted by the NHS to routinely handle medical data which is similar to the data we will be needing for our analysis.
- Harvey Walsh and UEA Norwich Clinical Trials Unit have relevant NHS clearances to receive your data.
- The researchers at UEA receive only DE-IDENTIFIED data and you cannot be identified
- At no point will your name or address leave the GP practice.
- The study has been approved by the Health Research Authority, following guidance from the Confidentiality Advisory Group (CAG), an independent body which provides expert advice on the use of confidential patient information
What to do if you want to opt out of your personal data being used in this way:
- If you do not want your data to be used in this way or included in the study, you have the option to withdraw from sharing your confidential information. This will not affect the care you receive in any way. Only your GP surgery will know whether you choose to opt out or not. Please ask a member of the reception team about how to do this.
How to find out more:
More information about the study can be found on our website: www.uea.ac.uk/arrisa-uk/patients
Telephone: Dr Stanley Musgrave (01603 593309) Dr Polly Ashford (01603 597666)
The University’s Data Protection Officer can also be contacted at firstname.lastname@example.org.