The Isle of Man Chief Minister has responded to a query from the Celtic League asking why data on cancer incidence has not been published.

He says that he has "been assured that the Department has no plans to conceal any data but rather it aims to ensure that the available data are presented in a meaningful way".

He also reveals that the data has been released to some groups by way of "a presentation to the Isle of Man's Cancer Task Force which includes representation from User Groups as well as Cancer Charities, in addition to professionals involved in providing care".

The Celtic League have said that in whatever form the cancer statistics are subsequently revealed the original data should also be published. In a letter to Chief Minister Tony Brown in August the League said:

"The unease and lack of confidence in respect of Cancer data in other jurisdictions is something I feel sure that the Manx government would not wish to see imported into the Isle of Man. For that reason it would be helpful if the government and Public Health Directorate would make the original data public."

Text on the Chief Minister's letter below:

"Our ref: CM 9.1/335(2)

4 September 2008

Mr B Moffatt Director of Information Celtic League 11 Cleiy Rhennee Kirk Michael ISLE OF MAN 1M6 1HT

Dear Mr Moffatt

Re: Withholding of Cancer Study Statistics

Thank you for your letter dated 9 August 2008 regarding the publication of Cancer Study Statistics, about which I have sought advice from the Director of Public Health.

I would like to make it clear that the Department of Health and Social Security (DHSS) plans to share all the information on the Cancer Study with the public and there is no attempt to conceal or withhold information. The North West Cancer Intelligence Service has analysed the Cancer Data for the Isle of Man and have already made a presentation of their preliminary findings to the professionals in the DHSS. They also made a presentation to the Isle of Man's Cancer Task Force which includes representation from User Groups as well as Cancer Charities, in addition to professionals involved in providing care.

As you will appreciate, the Government need to ensure that whenever any data is published it is accurate, easily understood and not subject to misinterpretation. For data on health problems such as cancer, consequences of any misleading or misinterpretation of data are significant. Because the field is so specialised, anyone attempting to interpret such data without sound background knowledge could create misinformation and potentially spread panic. Obviously the DHSS and the Government have a duty to prevent creating unnecessary panic and anxiety for the public.

To assist the public in understanding the data it is important that it is analysed appropriately. For example, cancer is predominantly a disease of old age and the number of cancer cases in any population is related to the age distribution within the population. To overcome the effect of differences in age structure between two populations, na technique called standardisation is used and the age standardised rates between two (or more) populations are compared; even then there is a possibility that any difference between the two areas could be random and statistical analysis is necessary to determine whether the differences are significant.

I have been advised that there are some other issues with regard to Cancer Statistics. For example often there is a tendency to draw rapid conclusions and proceed to attribute causes for any change. One has to exercise extreme caution before doing so. It is possible that the number of cases of Cancer could be increased suddenly due to the introduction of a new test. It is again well known that whenever a service for screening for any cancer is introduced, a sudden rise is noticed as the screening programme identifies a number of slow growing tumours.

Cancer Statistics are therefore highly specialised and require specialised knowledge in interpretation. This is the reason why the Isle of Man has contracted the North West Cancer Intelligence Service (who are specialists in this field) to undertake analysis of our data - rather than do it within the Department.

The Director of Public Health informs me that the Department will organise a presentation by the North West Cancer Intelligence Service later this year. During the presentation, which will be open to members of the public, the DHSS will present the number of cases of cancer and age standardisation rates for both the Isle of Man and North West England. The Department will also show the trends in cancer numbers in the last four years along with a consideration of their implications.

I have been assured that the Department has no plans to conceal any data but rather it aims to ensure that the available data are presented in a meaningful way. I am aware of the cases regarding Cancer Statistics in other jurisdictions but would not wish to comment on their approaches. Our approach is to ensure that the information that we hold is professionally interpreted to avoid misinformation and its potential negative consequences.

Yours sincerely

Hon J A Brown MHK Chief Minister"

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J B Moffatt Director of Information Celtic League

09/09/08

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