September 19, 2020

The Editor Speaks: NO to MANDATORY cancer register

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Colin Wilson2webThis is the first time I have republished an Editorial of mine in full but nothing has changed to alter my opinion except to harden it.

One of our FRONT PAGE stories is headed “Mandatory Cancer Registry Bill released for consultation”. When the release was sent to us by Government Information Services the word ‘Mandatory’ was missing. I am sure the persons behind this release deliberately chose to miss it out.

‘“To date, cancer reporting remains voluntary, which makes it challenging to collect accurate information Ministry of Health Chief Officer Jennifer Ahearn explained’ at the Press Conference on MANDATORY Cancer reporting held on Tuesday (10).”

“Recognising that privacy may be an issue for many patients and their families, the Premier emphasised that information maintained by the registry is confidential. Furthermore, through strict penalties the new legislation aims to ensure that this is always the case.”

Now why doesn’t that make me assured?

Because NOTHING is confidential when it is on a computer or in a hard copy file.

None of our data is Confidential – not even our credit/debit card information.

And here in Cayman it is worse.

I know first hand of two instances where so called confidential data stored at our government institutions was seen by persons who had no right of access to that information.

One involved cancer – “I didn’t know XXXXX had cancer. He/she was lucky. On a Gleason scale where 10 is the highest he/she had an 8. He/she is lucky to be alive.”

The other involved a child who is adopted. “I didn’t know your XXXXXXXXX was adopted.”

The government is calling on persons to comment on this Mandatory Cancer Registry Bill and I URGE you to say NO to MANDATORY. It is and MUST be the sole right of the cancer victim to give permission for his/her name to be added to the register. How dare anyone say or promote otherwise!

PLEASE read on:

What actual benefits do cancer sufferers get from a MANDATORY cancer registry? Shouldn’t they be consulted?
First Published June 3, 2014 by Colin Wilson Leave a Comment

I am quite frankly at a loss as to why it is necessary for a MANDATORY registry of cancer victims.

Cancer is not a disease that is spread from one victim to another and what exactly is the benefit to the cancer sufferer to know there are 3,000 other persons in Cayman with the same disease?

The answer is NONE.

At present in Cayman the cancer registry is voluntary. It was first introduced in 2010 when the Health Services Authority (HSA) and the Cayman Islands Cancer Society signed an agreement for the registry to be funded by the Cancer Society and housed and implemented by the HSA.

To date “only” 230 cases have been registered.

Now various statisticians and our own Health Minister, Osbourne Bodden, are working on a draft legislation to make it mandatory to report local cancer cases.

According to Amanda Nicholson, the Cancer Registrar, having accurate information would mean the information could be “analyzed, extrapolated and shared with the community regarding trends, risks and possible causes of cancer.”

Bodden said, “Armed with this information, we will be better able to target our resources to ensure that we are making the greatest impact in terms of prevention, and the data will also help guide us to make appropriate investments for treatment and care.”

Doesn’t that make a cancer victim feel better already?

I doubt it.

And even the chairman of the HSA, Jonathan Tibbetts, gives his support to a MANDATORY Register.

Haven’t any of these persons actually sought out the Cayman medical practitioners to ask their cancer patients what they feel about this?

Don’t the cancer sufferers have any say in their private information being sent to a database that is not even close to being 100% private?

No matter how many supposedly “strict conditions of respect for the confidentiality of medical information, particularly with regard to the physical security of their data files and the release of information to third parties” is incorporated in the Bill it is still open to being hacked.

This is just another chipping away of persons’ rights and someone saying we know better than you.

If a patient is diagnosed with cancer and goes on the register and is then cured, does he or she mandatorily come off? What is your bet on that?

When a poll is taken for any subject only a cross-section of the country is asked. That information is used to predict the result of an election, where to market your product, the demographics of your listeners and what age group etc. like what genres of music, television programmes they like, etc. They do not canvass the whole population.

With the information the cancer registry has from the persons who have VOLUNTARILY provided I am betting they already have enough to “analyze, extrapolate and share with the community regarding trends, risks and possible causes of cancer.”

Unfortunately the mandatory cancer registration has been forced on the victims in most of the major countries of the world for their own good. And what has the benefit been? Cancer is still rising. In the USA where the majority of states impose this mandatory registration it has been widely reported that cancer cases will rise 55% higher by 2030!!

However, the report said, “about one-third of the most common cancers could be prevented through eating a healthy diet, being physically active and keeping off excess weight”!

There. Can someone explain to me why a mandatory cancer registration is needed to execute that message?

It is just another example of government bureaucracy to justify someone’s importance and to show they are doing something even if the something could be better implemented somewhere else.

And where on earth is the money going to come from to implement all these “resources that ensure government is making the greatest impact in terms of prevention, and the data provided guiding them to make appropriate investments for treatment and care”?

The fact that ONLY 230 cases have been voluntarily reported here should tell the stats people, the ministers and the health chairpersons that cancer sufferers value their privacy.

At the very least consult them first!!

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