IBD Patient Survey - Frequently asked questions

1. You've asked for my details. Is the survey really anonymous?

The data collected on the registration page remains separate to any of the survey responses. The link sent to you via email ensures that your data is kept secure and not accessible to anyone else. Your email address will only be used to send you a link to access your survey, we will only send you further correspondence if you indicate that you would like this. You can update your preferences at any time by emailing info@ibduk.org.

2. My NHS trust is very small? Will my answers make me recognisable to them?

We will only make anonymised data available to services. If there are less than 20 patients who have responded for a service, we will not be providing data to that service to ensure that individuals are unidentifiable.

3. Why haven’t you asked about X? That’s really important to me.

Questions in the survey relate directly to the IBD Standards. Your answers will be used to grade (or ‘benchmark’) services in terms of how well they are performing against the IBD Standards. There are two free text box questions at the end of the survey, to allow you to share any further comments that are important to you.

4. What is IBD UK and the IBD standards?

IBD UK – a partnership of 17 patient and professional organisations working together for everyone affected by Inflammatory Bowel Disease - have come together to develop and publish new standards that define what good care should look like for people with IBD. Find out more about the IBD Standards. Crohn’s & Colitis UK, CICRA and the Ileostomy and Internal Pouch Association are all part of IBD UK. Each provide information, support and opportunities to get involved.

The IBD Standards say what high-quality care should look like at every point of the patient journey - from first symptoms, to diagnosis, treatment, and ongoing care.

The aim of the IBD standards is to remove the variation in care and ensure that people with IBD receive safe, consistent, high-quality, personalised care, whatever their age and wherever they live in the UK. We want to encourage healthcare services to recognise what they are doing well and identify where they need to improve.

More information can be found on our Patient Information page.

5. I’ve been receiving care from different hospitals OR I’ve moved hospitals recently – which hospital should I choose?

Please choose the hospital where you have received the majority of your care over the past 12 months. If you have NOT recently received hospital care or are not under the care of an IBD service, please select the hospital you live nearest to. Where hospitals are working together to provide an IBD service, we have listed these together. Please let us know by emailing info@ibduk.org if you are unable to find your service from this list or if it needs updating.

6. Can I do the survey twice for two different hospitals?

Unfortunately, you can’t. We would like you to complete the survey for the hospital in which you have received the majority of your care in for the last 12 months. It is important for us to get recent, up to date information, so that we know how hospitals are currently performing. Having information specifically from the last 12 months, will make it easier to compare data when we run the survey in the future.

7. I’m having trouble with the survey.

All patient enquiries should come to the IBD UK team via info@ibduk.org. Anything consequently identified as a technical issue, will then be flagged to the survey developer, so there may be a slight time delay in getting a response or solution, but we will work to resolve any problems as soon as possible and keep you up to date throughout.

8. I don’t have a computer / I don’t have an email address – what should I do?

You can either email IBD UK at info@ibduk.org or call Crohn’s & Colitis UK on 01727 830 038 to request a paper copy of the survey.

9. I don’t speak English – what should I do?

You can either email IBD UK at info@ibduk.org or call the Crohn’s & Colitis UK 01727 830 038 to request an interpreter to take you through the survey. It can take up to 1 week to book an interpreter depending on availability.

10. I think this is brilliant, how can I donate to support this project?

IBD UK is funded by Crohn’s & Colitis UK. To make a single or regular donation to this project, use the quick and easy donate page on the Crohn’s & Colitis UK website, there is a text box at the bottom where you can specify what you would like your donation to go towards. Thank you for supporting us.

11. What happens to my data? Is it safe and secure?

The data collected on the registration page remains separate to any of the survey responses. The link sent to you via email ensures that your data is kept secure and not accessible to anyone else.

Once you've logged in, your personal details will be stored in the system while you complete the survey, because you can save and return later, personal data needs to be stored over this period.

Once you have submitted your survey, all the data you have entered is locked and cannot be amended or viewed by anyone. When the survey closes your personal details are anonymised, meaning there is no link between you and the data you have submitted.

The system generates various reports on all the data collected during the survey, once these have been generated the original survey data is deleted.

Your email address will only be used to send you a link to access your survey, we will only send you further correspondence if you indicate that you would like this otherwise it will be deleted when the survey data is deleted.

12. How secure is your CMS (content management system)? Can it be hacked?

Unfortunately, any system can be hacked, given enough time and resources (even the Pentagon was hacked) but the system for the IBD Patient Survey has been built on has been developed with security of your data as a top priority. The development company have used security best practice and the survey will be hosted in a UK based data centre environment, on enterprise grade hardware.

13. I forgot my responses to the survey last month, can you send me my answers?

Once a patient survey has been submitted, it is not possible for us to retrieve the data because it is not related to an individual, as the process is totally confidential.

14. I can’t remember if I did the survey already. Can you tell me if I have?

Yes, up until the point that the survey closes, the IBD UK Team will be able to see who has registered, and the status of their survey. Once the survey closes this will no longer be available, because we will run a process to remove all personal data.

15. Can I talk to someone over the phone about the survey?

You can call Crohn’s & Colitis UK 01727 830 038 and book and appointment with a volunteer to complete the survey over the phone and discuss any questions you might have.

16. I am affected by my Crohn’s or Colitis and need some support, where can I go?

You can visit the Patient Information page on the IBD UK website – where you will find information on the 3 patient organisations within IBD UK: Crohn’s & Colitis UK, CICRA and IA (Ileostomy and Internal Pouch Association). As well as other information that we hope you find useful.

17. I can’t answer all the questions and can’t go to the next section – what should I do?

You will not be able to move onto the next section until all questions are answered. Most questions have a ‘Not applicable’ and a ‘Don’t know / Can’t remember’ option, so please use these where appropriate. If there are no answers that match your situation, pick the answer you feel is closest.

18. The survey keeps crashing, what should I do?

All survey issues can be sent to the IBD UK team via their email info@ibduk.org. Anything consequently identified as a technical issue, will then be flagged to the survey developer, so there may be a slight time delay in getting a response or solution, but we will work to resolve any problems as soon as possible and keep you up to date throughout.

19. I completed the survey wrong; can I start again?

Yes, if you contact info@ibduk.org call Crohn’s & Colitis UK on 01727 830 038 you can request this. The IBD UK Team will be able to delete your entire survey entry and then you will need to register for the survey again, to start from the beginning with your new answers.

20.I have a comment, complaint or compliment.

Please contact info@ibduk.org or call Crohn’s & Colitis UK on 01727 830 038. We would love to hear your feedback, good or bad, so that we can be sure to keep improving the survey for future years.

21. Why is my hospital grouped with another hospital?

Some hospitals that work under the same NHS Trust or Health Board may work together to provide one IBD service. It could be that they have shared management, or it could be that the IBD Team works across different hospital sites. We have therefore grouped these hospitals so that the results reflect how the IBD Team is organised.

Any questions not covered?

Please contact us at info@ibduk.org