Cancer charity stresses importance of registry

| 03/03/2015 | 5 Comments

(CNS): The Cancer Society has pointed to the pressing need for a mandatory register in Cayman for cancer cases to allow medical experts to get an understanding of the disease and hopefully save more lives. With some factions of the community opposing the mandatory registration, the charity has re-emphasised the confidentiality as well as the importance and urgency of the register.

“Currently, there is almost no information about cancer trends in this country,” officials from the society said Monday. “It is still unclear how many people are diagnosed with cancer in the Cayman Islands every year, which types of cancer are most common, or whether we are seeing higher rates of cancer here than in other countries.  In addition to answering these questions, the registry also hopes to use this data to identify potential environmental concerns which may contribute to cancer incidence.”

A 30 day consultation period on the legislation to provide for the register began last month and the bill, once passed, will provide for the automatic reporting of cancers diagnosed her to a national registry.  Doctors will be mandated to report the cancer and demographic information to the registry for the purpose of conducting research into the causes and management of cancer in the Cayman Islands.

“Confidentiality is of the highest importance, and great measures have been taken to ensure the confidentiality of those registered,” a spokesperson for the charity stated.  “Names of registrants are not entered into the registry and all data is coded.”

Allaying unfounded fears about confidentiality, officials said it would be impossible for the personal details of individuals to be exposed as they will not be in the database.  The cancer registry is not part of the government’s internal IT system and can only be accessed with a user name and password which are changed regularly.  Should someone manage to access the database the identities of individuals will not be available as no names or other identifying information is held there.

The World Health Organization estimates that cancer rates could increase 50% by the year 2020 and as a result is encouraging all countries to introduce registers that can provide reliable data.

“By far, the most reliable data comes from registries which require automatic reporting from physicians,” the Cancers society said. At present more than half or registers worldwide have mandated reporting. The UK has had mandatory reporting in place since 1993 and has one of the most comprehensive registries in the world.

Despite opposition from some quarters the Cancer Society has, it said received considerable support for the bill which is expected to reach the floor of the Legislative Assembly at the next sitting in April. It pointed out that many cancer survivors, and families of cancer victims have already registered but the data that can be collected via mandatory reporting will be an important tool in the fight against the disease.

“We will continue to be a strong advocate for the automatic reporting of cancers to the national registry,” the society said adding that the initiative will advance local knowledge about how the disease impacts the community.

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Comments (5)

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  1. mpd says:

    The real trouble starts when insurance companies get access to that data.
    And they WILL . . . . . .

  2. Anonymous says:

    I find it interesting that people have “privacy” concerns when it comes to a cancer registry, but yet are eagerly throwing all kind of information and pictures on various social websites without the proper data protections in place. Most of us are happily whatsupping or bbming on a daily basis without having any concerns over how secure that data is. A cancer registry could offer valuable inside in the cancers that seems to prevail in Cayman, not sure I follow the concerns some people have in regards to such a registry.

  3. Anonymous says:

    It beggars belief that people in Cayman could be against the registry. I wonder if what people are worried about is really privacy. You don’t really fight cancer in private, do you? In such a small community, if someone is diagnosed, everybody will know. Specially if that person undergoes some harsh and very visible cancer treatments. I wonder if the matter is that people are AFRAID TO KNOW that some difficult to tackle environmental factors have more to do with it: the dump and heavy spraying for mosquito control that these islands have faced for many years, for example. It is particularly shocking to see so many cases of very rare and aggressive cancers in children and young people in such a small community and seemingly unpolluted place to live. It is great to see so much support campaigns for donations into research to find the cure for cancer nowadays, but very little is being done to try and find out what are the real factors that are contributing or directly causing people to develop cancer in first place.

  4. Anonymous says:

    The point is that the Cayman Islands has totally inadequate data protection provisions that need to be in place before any such registry can be set up, particularly one that comes with criminal sanctions attached.
    The Cancer Society is utterly unqualified to comment on this aspect (as indeed on data security issues also).

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