COVID-19 UK IBD tool for patients
- Find out your risk from COVID-19
- Help the NHS to help you
- Help us find out how COVID-19 affects people with IBD across the UK
Update on the COVID-19 UK IBD Tool for patients
Over ten thousand people in the UK with IBD have entered their data over the past few days, many of them giving feedback on the Tool. This has helped us to make sure that the risk levels in the Tool are based on accurate, up-to-date information from patients. In...
Stuart Bloom, IBD Registry Medical Director and Caldicott Guardian
“In light of the government’s intention to shield high risk patients, The UK IBD Registry and the British Society of Gastroenterology (BSG) have developed a web-based tool for people with Crohn’s disease, ulcerative colitis or unspecified IBD so they can assess their level of risk relating to COVID-19 and communicate it to their IBD specialist team and the NHS.
The tool is simple to use, will take 5-10 minutes to complete, and asks for only enough data to help the NHS help you. All of us in the NHS involved in caring for patients with IBD send you our best wishes at a difficult time and urge you to consider filling in the tool.
Your data will be kept securely in line with full information governance requirements and will only be used for purposes relating to the COVID-19 pandemic.”
Why is the COVID-19 UK IBD tool needed?
The UK government has recommended measures for shielding and protecting people who are defined on medical grounds as extremely vulnerable from COVID-19.
- It’s important that this group of people know that they’re at high risk.
- It’s also important that their hospital team and GP know who they are, as well as relevant NHS bodies such as NHS England. Sharing this information with hospital IBD teams helping them to be clear about who is in which risk group and means they can contact patients quickly if the advice changes.
- Data collected will help us to understand how COVID-19 affects people with IBD across the UK, now and in the future.
What do people with IBD need to do?
- If you have IBD, please go to the COVID-19 UK IBD tool, complete the questionnaire and submit your results. Doing this will make sure that your risk level is based on accurate, up-to-date information from you.
- Please do this, even if you already know what risk group you are in.
- After you’ve entered your data you can download and print a document confirming your risk group.
- You can do this as many times as you like.
- It really helps us if you have your NHS number, but it’s not essential.
The information you provide will allow your IBD team to support you better, since they will be able to contact you with specific advice based on your risk status and actual needs, if necessary.
Cathryn Edwards, BSG President
“At a time of great uncertainty and anxiety for many people in the UK, I want to reassure you that the BSG is doing everything possible to provide help and accurate information to clinicians and patients alike.
In response to the government’s mandate to identify high-risk patients on immunosuppression, the BSG-COVID-19 Working Group has defined and published a grid on risk levels for people with IBD. This grid has been updated for clarity today 29.3.20 to improve everyone’s understanding of the categories.
You may have already seen this and know whether you fall into the low, medium, or high-risk group. Crohn’s & Colitis UK have been particularly helpful in supporting this with information and FAQs on their website.
The partnership between patients, doctors, nurses and our specialty society the BSG, has never been more important than it is today.
Many of you may be asking what you can do to help your IBD team and the NHS get your data correctly recorded. Please consider entering your data into the COVID-19 UK IBD tool as part of our combined efforts against COVID-19. Click here to do this.
I want to thank you as a doctor and as an individual for supporting this initiative and for following the strict distancing and isolation procedures as advised.
The strength of our response to this emergency is in our collective action.”
What will happen to the data?
Data will be kept securely in line with full information governance requirements, using the IBD Registry’s existing secure data hosting facility at AIMES. It will only used for purposes relating to the COVID-19 pandemic.
What will the data be used for?
This important data will be used to:
- Collect relevant information from people in the UK living with IBD, to be able to quickly and easily determine the level of risk
- Allow respondents to enter details about their health and hospitals, specialist doctors and the GPs that care for them so that the responses can be shared with both the hospital teams that currently care for them and their GP. This means that they have the most up to date information about their patients’ condition and treatment which could be relevant during this COVID-19 response period. In addition, this information can be shared centrally with NHS England and equivalent bodies in the devolved nations to allow them to better respond to the COVID-19 pandemic.
- Enable specialist doctors and GPs to contact patients to:
- Request more information if necessary
- Inform patients if any changes are made to advice for patients on their risk
- Provide any specific advice based on their risk status or individual needs
- Support their medical needs in any other way during the COVID-19 outbreak
- Enable research and/or analysis to improve care and treatment for IBD patients in relation to COVID-19
For full details of how your data will be used, please see our Privacy Notice
How is the data protected?
The UK IBD Registry is the Data Controller for the personal information we process in the tool. All data collected will be processed in accordance with the General Data Protection Regulation (GDPR) and the Common Law Duty of Confidentiality (CLDC). The data is being collected using a well-established web-based tool designed for undertaking medical surveys and is held within a secure datacentre which is compliant with industry and NHS data security standards.
For further information, including details of our lawful basis, the purposes for which personal confidential data will be processed, your rights and how to contact us, please see the full Privacy Notice here
What about people who have already been contacted by their hospital team, GP or the NHS?
You may have already been contacted by letter from the NHS, but we still ask you use the COVID-19 UK IBD tool, as it assesses people with IBD specifically. It should only take you a few minutes to complete.
More Information
If you have questions about IBD and COVID-19, you can find a wealth of information for adults at Crohn’s and Colitis UK and for children and young people at CICRA.
Nick Kennedy, Consultant in Gastroenterology, Royal Devon and Exeter NHS Foundation Trust and IBD Registry Clinical Technical Lead
“We’ve designed this easy-to-use tool as a practical way to use the BSG’s risk grid to help identify people with IBD who are at the highest risk of serious illness from COVID-19.
It also provides a platform for us to help find out how COVID-19 affects patients with IBD. This should significantly improve our ability to evaluate their risk in future.”
Your feedback
We’ve worked hard to make our tool and the information about it easy to understand and use. If you have suggestions on how we could improve anything, we’d really like know.
Please only use this form for feedback on the tool itself. We’re unable to answer questions on COVID-19 and IBD – we are only a small staff and we are not a medical office. Your IBD team are best able to help you with specific medical enquiries. Crohn’s & Colitis UK and CICRA also have more general patient information and guidance available on their websites.
Working together to combat COVID-19
We’ve been able to develop our tool rapidly thanks to the collaboration of a number of clinicians and partners. We’re happy to share what we’ve learned in order to help others.
Clinical and academic groups, please contact support@ibdregistry.org.uk
Media and other enquiries, please contact comms@ibdregistry.org.uk
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