Data on IBD on the island

Summary

A request was made for coded patient data on Inflammatory Bowel Disease across Isle of Man GP surgeries to aid service development, but the Department of Health and Social Care refused the request stating they do not hold the information.

Key Facts

• The Department of Health and Social Care does not hold the requested patient data.
• Most Group Practices on the island are private organizations not subject to the Freedom of Information Act 2015.
• The requester was advised to contact Manx Care or the Public Health Directorate for potential data.
• The Department was redesigned on 1 April 2021 following Sir Jonathan Michael's Independent Review.
• Ballasalla Group Practice is the only exception noted regarding the private status of practices.

Data Disclosed

• 4531829
• 2025-03-21
• 2025-03-31
• 24 March 2025
• 1 April 2021
• Section 11(3)a
• Section 15

Exemptions Cited

• Section 11(3)a of the Freedom of Information Act 2015 (Information not held)

Original Request

Please can you provide me with the number of patients at each Isle of Man GP surgery who currently have a coded EMIS "problem" which words include "Ulcerative Colitis", "Microscopic colitis", "Lymphocytic colitis", "Crohn's disease," "Crohn's colitis", "Inflammatory Bowel disease", "idiopathic inflammatory bowel disease", "Crohn's disease of the ileum", "Crohn's disease of the ileum unspecified", "Crohn's disease of the large bowel NOS", "Crohn's disease of the small bowel NOS", "orofacial Crohn's disease", "Ulcerative proctitis", "Ulcerative proctocolitis", "Ulcerative Colitis and/or proctitis", "Ulcerative proctocolitis", "[RFC] Ulcerative Colitis", "[X] Other Ulcerative Colitis", "Ulcerative (chronic) ileocolitis", "Ulcerative (chronic) enterocolitis", "Ulcerative pancolitis", "Ulcerative pancolitis NOS", "collagenous colitis", "Ulcerative ileocolitis", "Ulcerative rectosigmoiditis", "Ulcerative proctocolitis NOS", "Ulcerative enterocolitis", "Ulcerative pancolitis", "other idiopathic proctocolitis", "Idiopathic proctocolitis NOS", "regional enteritis of the small bowel", "regional enteritis of the large bowel", "regional enteritis ileocolitis", "regional enteritis NOS", "regional enteritis- Crohn's disease", "Crohn's disease of the terminal ileum", "[RFC] Crohn's disease", "Crohn's disease of the ileum NOS", and "Crohn's disease of the ileum unspecified". I do not wish to have the data of infective colitis or gastritis. This is for the purpose of getting data to identify the numbers of patients identified with this condition to formulate the development of services.

Data Tables (1)

Full Response Text

Chief Officer: Paul Richardson Freedom of Information Team First Floor Belgravia House Circular Road Douglas IM1 1AE

Our ref: 4531829 24 March 2025

Dear ###

We write further to your request received 21 March 2025, which states:

"Please can you provide me with the number of patients at each Isle of Man GP
surgery who currently have a coded EMIS "problem" which words include "Ulcerative
Colitis", "Microscopic colitis", "Lymphocytic colitis", "Crohn's disease," "Crohn's colitis",
"Inflammatory Bowel disease", "idiopathic inflammatory bowel disease", "Crohn's
disease of the ileum", "Crohn's disease of the ileum unspecified", "Crohn's disease of
the large bowel NOS", "Crohn's disease of the small bowel NOS", "orofacial Crohn's
disease", "Ulcerative proctitis", "Ulcerative proctocolitis", "Ulcerative Colitis and/or
proctitis", "Ulcerative proctocolitis", "[RFC] Ulcerative Colitis", "[X] Other Ulcerative
Colitis", "Ulcerative (chronic) ileocolitis", "Ulcerative (chronic) enterocolitis", "Ulcerative
pancolitis", "Ulcerative pancolitis NOS", "collagenous colitis", "Ulcerative ileocolitis",
"Ulcerative rectosigmoiditis", "Ulcerative proctocolitis NOS", "Ulcerative enterocolitis",
"Ulcerative pancolitis", "other idiopathic proctocolitis", "Idiopathic proctocolitis NOS",
"regional enteritis of the small bowel", "regional enteritis of the large bowel", "regional
enteritis ileocolitis", "regional enteritis NOS", "regional enteritis- Crohn's disease",
"Crohn's disease of the terminal ileum", "[RFC] Crohn's disease", "Crohn's disease of
the ileum NOS", and "Crohn's disease of the ileum unspecified". I do not wish to have
the data of infective colitis or gastritis.
This is for the purpose of getting data to identify the numbers of patients identified
with this condition to formulate the development of services."

While our aim is to provide information whenever possible, in this instance the Department of Health and Social Care (the Department) is unable to provide the information that you have requested. This is in line with Section 11(3)a of the Freedom of Information Act 2015 (the Act), as a practical refusal reason applies; namely we do not hold or cannot, after taking reasonable steps to do so, find the information that you have requested.

While our aim is to provide information whenever possible, under Section 15 of the Act (Duty to provide advice and assistance), the information you are requesting is likely held by the individual Group Practices themselves. Currently, all of the Group

Practices on the Island (excluding Ballasalla Group Practice), are individual private organisations which are not subject to the provisions of the Act.

Dependant on the reporting structure implemented with the individual Group Practices, you may wish to direct your FOI request to Manx Care as they are the Health & Care Services provider for the Isle of Man and may hold collated data along with the possible data collected through Ballasalla Group Practice. Alternatively, as the subject of your request relates to research/development, the Public Health Directorate (a division of the Cabinet Office) may be able to help with obtaining the information requested.

To provide further advice and assistance, the Department redesigned on 1 April 2021 as a direct result of Sir Jonathan Michael’s Independent Review of the Isle of Man Health and Care System. This Review continues to be a catalyst for change and improved service provision. The redesigned Department ensures the separation between the setting of policy and strategy and the delivery of services by Manx Care.

Please quote the reference number 4531829 in any future communications.

Your right to request a review

If you are unhappy with this response to your freedom of information request, you may ask us to carry out an internal review of the response, by completing a complaint form and submitting it electronically or by delivery/post.

An electronic version of our complaint form can be found by going to our website at https://services.gov.im/freedom-of-information/Review . If you would like a paper version of our complaint form to be sent to you by post, please contact me and I will be happy to arrange for this. Your review request should explain why you are dissatisfied with this response, and should be made as soon as practicable. We will respond as soon as the review has been concluded.

If you are not satisfied with the result of the review, you then have the right to appeal to the Information Commissioner for a decision on; 1. Whether we have responded to your request for information in accordance with Part 2 of the Freedom of Information Act 2015; or 2. Whether we are justified in refusing to give you the information requested.
In response to an application for review, the Information Commissioner may, at any time, attempt to resolve a matter by negotiation, conciliation, mediation or another form of alternative dispute resolution and will have regard to any outcome of this in making any subsequent decision. More detailed information on your right to a review can be found on the Information Commissioner’s website at www.inforights.im. Should you have any queries concerning this letter, please do not hesitate to contact me.

Further information about freedom of information requests can be found at www.gov.im/foi.

I will now close your request as of this date.