Why should I want to be involved with the IBD Registry?
The IBD Registry has been set up to collect information about Inflammatory Bowel Disease (IBD) from across the UK.
Collecting this information will:
- Help hospitals to improve their care of people with colitis and Crohn’s disease
- Help improve our understanding of how people’s lives are affected by IBD
- Help the NHS design better IBD services
- Support research into IBD.
By allowing your data to be collected by the Registry, you will be helping to shape the future care of people with IBD. The more data we can collect, the better our understanding of the disease and the better our chances of learning how to improve patient care.
How safe is my personal information?
It is perfectly fine and important for all the hospital staff involved in your care to know your personal details. However, once your data leaves the hospital, we have to make sure we safeguard your identity and ensure your details are properly protected. We do that by working with the Health and Social Care Information Centre (HSCIC), which is an NHS-approved data ‘safe haven’. They take the data direct from the hospital and extract some of the information to make it ‘pseudonymised’ (almost anonymous) before sending it to the IBD Registry. This means that, by the time your information reaches the IBD Registry, we cannot identify who you are.
As part of this process, the HSCIC remove your NHS number and replace it with a unique IBD Registry number. This means the Registry doesn’t know your NHS number and we can’t find it out, but the HSCIC does hold a safety file that keeps track of which IBD Registry number matches which NHS number. In this way, if there is a safety reason or if there is a research project for which you may be eligible, we can ask the HSCIC to get in touch with your doctors.
What does the IBD Registry do with my information?
The information held on the Registry will be analysed by clinicians and statisticians who are part of the Registry Team. They will use the data to help us learn more about IBD care in the UK.
The team will look at how many people with IBD there are in different areas in the UK. We will also be able to learn how IBD affects different people and what treatments and services they receive. This will help us understand more about the illness and help improve the quality of care for people with IBD.
We may also allow approved research projects to analyse the data under strict conditions.
Any reports that are published will be available at www.ibdregistry.org.uk
What do I need to do if I’m happy for my data to be used by the IBD Registry?
One of the things we’re asking all patients to do is to give consent for their data to be used. This is in line with what’s happening in the health service generally. You don’t have to give consent for your data to be used for your IBD care in your hospital, but if its going to be used for another purpose (such as for the Registry) then you should be asked to give written consent.
When your hospital starts participating in the IBD Registry, you may be sent or given a Patient Information Leaflet to read and, if you are happy to proceed, there will be a Consent Form you can sign.
How does the IBD Registry protect my data?
The diagram below explains how information about your care is made available to the Registry, how it is managed to protect your anonymity, and how it is used to evaluate and improve services.
Roz Prescott is a patient ambassador for Crohn’s & Colitis UK. In this video clip, she talks about how collecting patient information on an electronic system can help patients by summarising all their medical history in one place and how this improves the clinic experience for all.
Richard Driscoll, Development Lead at the IBD Registry, explains how your information is protected when it is sent to the IBD Registry and why that’s important.
Do I have to give my consent now?
For the time being, in recognition of the practical issues of quickly getting consent from every IBD patient in the UK, the Secretary of State has granted an exemption to allow existing data to be sent to the Registry. That means that, until May 2017, the pseudonymised data can be used without written consent, but doctors and nurses will be asking their IBD patients to give their formal written consent to use their data in the future. We hope that you will recognise the benefits of the Registry and will consent to your pseudonymised data being used.
We hope that you will also consent to your data being used for research, because that will be of long-term benefit to all patients with IBD. The more data we have for medical research, the greater the benefit to all people with IBD.
What if I don’t want my data to be used?
Please talk to your IBD doctor or nurse about any concerns you have. The IBD Registry will be most effective if it gathers as much information from as many patients as possible. However, if you decide that you don’t want your data to be used, you have the right to refuse your consent and immediately stop any data about you being used. Please tell your doctor or nurse that you don’t wish your data to be sent to the IBD Registry. Your treatment will not be affected in any way.
Can I change my mind at a later date?
Crohn’s disease and ulcerative colitis are long-term conditions and so having information about the disease over time will be very useful. The Registry aims to monitor information on as many people with IBD for as long as possible. However, if, in the future, you decide you wish to stop information about your IBD from being sent to the IBD Registry, you should speak to your IBD doctor or nurse, or you can contact the Registry Administrator direct at the address below. Similarly, if you have previously refused consent, but now wish to take part please talk to your IBD doctor or nurse.
How can I learn more about the IBD Registry?
The best person to talk to is your IBD doctor or nurse. If you would like to see the full consent pack that you will be given by your IBD team, you can download it here.
Which organisations are involved in the IBD Registry?
The IBD Registry is run by the British Society of Gastroenterology and supported by:
- Crohn’s and Colitis UK
- CICRA – Crohn’s in Childhood
- Association of Coloproctology of Great Britain and Northern Ireland
- British Dietetic Association
- British Society of Gastroenterology
- British Society for Paediatric Gastroenterology, Hepatology and Nutrition
- Primary Care Society for Gastroenterology
- Royal College of Nursing – Gastrointestinal Nursing Forum
- Royal College of Physicians – IBD Programme
British Society of Gastroenterology, 3 St Andrews Place, Regent’s Park, London NW1 4LB
Tel: 020 7935 3150
The British Society of Gastroenterology is a charity registered in England: Charity number 1149074