Consent and patient information
for hospital IBD teams
An update from the IBD Registry 05/02/2024:
We are no longer accepting consents due to the impending closure of the IBD Registry. The information below is for historical documentation only. After 31 March 2024, the materials below may be out of date with links to documents no longer active.
This page contains archived content about our consent process and patient information materials
Our consent form and Patient Information Leaflet were updated in early 2023 (to Version 4.2). As part of the update to Version 4 in early 2022, the consent process was changed to make it faster and easier. People with IBD were able to join the Registry directly using our online consent form (paper forms are also available). This meant that IBD teams no longer need to collect and record patient consents for the IBD Registry on their clinical systems.
Extract Filter Tool
Our Extract Filter Tool is a desktop application that could be downloaded and used by NHS Trusts to filter their data extract files so that they are only sharing permissioned records with the IBD Registry. This ensured data files only contain data consented using our revised (V4.2) consent process or allowed to flow under the s251 provision.
IBD teams in England used it to ensure compliance with the national data opt-out (see more below).
We have more information about the Extract Filter Tool here.
National data opt-out and the IBD Registry
The national data opt-out for NHS Trusts in England came into force on the 31 July 2022. It allows patients to opt-out from their personal information being used for planning and research purposes without their consent. However, a patient can still consent specifically to activities that they are happy for their data to be used for.
So if a patient has chosen the national data opt-out, but also given consent specifically for the IBD Registry, this consent allows their data to be shared with us.
If a patient has opted-out and has not consented to join the IBD Registry, then their data must not be shared with us.
IBD teams can use our Extract Filter Tool to ensure compliance with the national data opt-out (required only in England). Please note: this can only be done by using NHS Digital’s MESH system to obtain a list of patients who have not opted out. We have further guidance on preparing your files to comply with the national data opt-out.
NHS Digital has more information about the national data opt-out on their website.
Archived Consent Materials for IBD Teams
How to use the IBD Registry e-consent materials
This set of materials has been designed to support hospital IBD teams in promoting the IBD Registry’s new consent process, in particular e-consent. Although paper forms are available, we are keen to point people towards completing the online form wherever possible.
You are welcome to use as many or as few of the materials as you like – this pack has been designed to provide ideas on how you might promote e-consent as well as assist with the wording of communications to patients. You can find more information about the consent process including our paper consent form and patient information leaflet here.
Please note that you will still need to follow your internal approval processes and authorisation routes regarding communication with patients.
We ask that you do not change the meaning of what we have written, however it is fine if you want to amend any wording to suit your Trust or top and tail it with any Trust/hospital-specific information.
If you need any additional materials to help in your roll-out of the IBD Registry’s new consent, or have any queries about what has been included in this pack, please email [email protected] and we will be happy to assist you.
Letters to patients*
Dear xxx
Your IBD team at [insert Trust/hospital] supports the IBD Registry, which collects and analyses health data to help improve IBD services across the UK. As an IBD patient, you can join the Registry to help improve treatment and care for people with IBD and support vital research.
[Option: If you have previously consented to the IBD Registry, thank you for your support. You are now being asked to complete the Registry’s new online consent form to update your details and preferences.]
[Option: If you have previously declined to participate in the Registry, this letter is to inform you about new changes that allow you to support research into IBD if you choose to join.]
I’m interested in joining the IBD Registry. What do I do?
The IBD Registry collects health data from NHS hospitals and analyses this information to help improve services for people with IBD. It also supports new research into these conditions.
You can join the Registry online to agree to your data being used to support this valuable resource. You can also give permission for your data to be used for research, and tell the Registry if you want to be contacted about new studies that are relevant to you and you may want to take part in. This can make it easier for researchers to recruit the participants they need.
To find out more about the IBD Registry and how to sign up, go to ibdregistry.org.uk/join or scan the QR code on this letter using your smartphone or tablet/iPad.
Leaflet for patients**
Poster for waiting room/notice board**
Our patient poster is available here.
Suggested text for email signature
This Trust supports the IBD Registry. People with IBD can join the Registry to help improve IBD treatment and care and to support research. Find out more at ibdregistry.org.uk/join
Suggested text for IBD helpline email: out-of-office/auto-response
This Trust supports the IBD Registry. People with IBD can join the Registry to help improve IBD treatment and care and to support research. Find out more at ibdregistry.org.uk/join
Suggested text for hospital website/Facebook page/IBDR page on app (e.g. My Medical Record)
Your data can help improve the lives of people with IBD
Join the IBD Registry to help improve treatment and care and to support research.
The IBD Registry collects health data from NHS hospitals and analyses this information to help improve services for people with inflammatory bowel disease (IBD). It also supports new research into these conditions.
You can join the Registry online to make sure your data can be used to support this valuable resource. You can also give permission for your data to be used for research, and tell the Registry if you want to be contacted about new studies that are relevant to you and you may want to take part in. This can make it easier for researchers to recruit the participants they need.
To find out more about the IBD Registry and how to sign up, go to ibdregistry.org.uk/join
Insert in appointment/clinic letters*
Join the IBD Registry to help improve treatment and care and to support research
The IBD Registry collects health data from NHS hospitals and analyses this information to help improve services for people with inflammatory bowel disease (IBD). It also supports new research into these conditions.
You can join the Registry online to make sure your data can be used to support this valuable resource. You can also give permission for your data to be used for research, and tell the Registry if you want to be contacted about new studies that are relevant to you and you may want to take part in. This can make it easier for researchers to recruit the participants they need.
To find out more about the IBD Registry and how to sign up, go to ibdregistry.org.uk/join or scan the QR code on this letter using your smartphone.
Addendum to appointment/clinic letters*
Join the IBD Registry to help improve treatment and care and support research
The IBD Registry collects health data from NHS hospitals and analyses this information to help improve services for people with inflammatory bowel disease (IBD). It also supports new research into these conditions.
You can join the Registry online to make sure your data can be used to support this valuable resource. You can also give permission for your data to be used for research, and tell the Registry if you want to be contacted about new studies that are relevant to you and you may want to take part in. This can make it easier for researchers to recruit the participants they need.
To find out more about the IBD Registry and how to sign up, go to ibdregistry.org.uk/join or scan the QR code on this letter using your smartphone.
Text Message (e.g. SMS, DrDoctor etc)
Your IBD team at [insert Trust/hospital] supports the IBD Registry, which collects and analyses health data. You can join the Registry to help improve IBD treatment and care and support research.
Link is www.ibdregistry.org.uk/join
Patient handout on consent
Our patient handout on consent is available here.
*We can provide a QR code that will take participants directly to the e-consent link when scanned using a smartphone. We are sharing this as a separate image file that can be inserted into your documents.
You are also very welcome to use our logo alongside any of these messages. If you would like to use our logo, please get in touch at [email protected] to ensure that we can provide you with the right version.
**Our patient leaflet and poster have been co-developed with our Patient Advisory Group to share more information about the IBD Registry and promote consent with patients. They are available to share with patients as an online or printed copy. If you would like to receive a printed pack of these materials to share with patients, please get in touch at [email protected]