Cayman’s cancer statistics still inadequate
Jennifer Weber, Operations Manager of the Cancer Society (left) and Amanda Nicholson, the Cancer Registrar
(CNS): The voluntary registration rate for the Cayman Islands Cancer Registry is beginning to increase. But officials have said that the statistics, compiled with information supplied by a dozen medical professionals, that reflect local trends for the illness that impacts so many people are still inadequate. A release from the Health Services Authority this week said there is still almost no information available regarding cancer trends in Cayman.
“There is no data showing the number of people diagnosed every year, which cancers are most common, or whether there are environmental factors which may be contributing to cancer incidence,” the officials stated, though they remain hopeful that as the number of patients willing to register increases, the critical questions will begin to be answered.
Plans last year to introduce a mandatory register in order to help public health officials and experts in the local field collect the necessary data were derailed because some thought the law was too intrusive into people’s medical history and there were concerns that the insurance companies would abuse the data to refuse cover.
CNS contacted health officials earlier this week to find out whether there are plans to re-write the law so that all the data could still be gathered in ways that offer patients more comfort about the protection of personal information, but we have not received a response.
In the meantime, the registry remains a voluntary one and twelve physicians regularly supply information about patients. However, this will not give professionals the full picture they need to understand the trends and make policy recommendations regarding prevention, treatment and cure or to meet the demands the illness places on the healthcare system.
Anecdotal evidence suggests that the jurisdiction could have a high rate of cancer sufferers, especially in younger patients, pointing to a possible specific localized environmental cause, but without the full data for analysis and research, experts can make no conclusions at all about the rate or causes.
While there have been more entries, the Health Services Authority (HSA) and the Cayman Islands Cancer Society (CICS) are encouraging survivors and patients to come forward to help to create a more comprehensive registry.
“A cancer registry is critically important to the future of healthcare in the Cayman Islands,” said Dr Sook Yin, Cayman Islands Cancer Society Medical Advocate for the Cancer Registry. “As a country, we need to understand cancer trends so that we can do everything possible to mitigate cancer risks.”
Dr Virginia Hobday, Medical Director of Cayman Hospice Care and Vice Chair of the Medical and Dental Council, shared Dr Yin’s sentiment over the need for an effective registry. “The medical profession worldwide is united in their opinion that the healthcare of future generations will be seriously compromised without the data that cancer registries provide,” she added.
Cancer registries contribute to scientific research into causes and cancer management. They also provide evidence for policymaking and the monitoring of programme implementation. The immeasurable benefits of a comprehensive cancer registry are why the WHO and the Pan-American Health Organization (PAHO) are strongly encouraging all nations to take necessary steps to ensure they have reliable cancer surveillance data.
According to the WHO, there are over 100 cancer registries worldwide, including the United States, Canada, England and Australia, which have implemented automatic reporting to cancer registries. The IARC, an intergovernmental agency forming part of the World Health Organization (WHO) of the United Nations, also has plans to make improvements by creating six hubs, including one in the Caribbean.
The data collected by Cayman’s national registry is based on recommendations from WHO and stored in a database designed by the international public health agency, but customised to fit the needs of the country’s unique community. All information included in the registry is anonymised before being entered into the database, which means names are not included. Access to the registry database is restricted. The public does not have access under any circumstances; only the Cancer Registrar has access.
If a cancer survivor wishes to register they may contact Amanda Nicholson, the Cancer Registrar, at 244-2560 or Amanda.nicholson@hsa.ky. Registering is fast, easy, and only takes a couple of minutes. It can be done face to face or via e-mail.
Category: Health, Medical Health
This seems a pointless exercise. Suppose 50% of the population are not ‘born Caymanians’; apart from melanomas resulting from exposure to excessive UV rays, any cancer that develops is more than likely due to family trait or environmental or bacteriological/chemical causes from the person’s previous place of residence. There is thus no local trigger.
The other 50% (the ‘born Caymanians’), form too small a number for meaningful statistical analysis.
It is already too easy for an individual’s medical situation to become public knowledge; one visit to a hospital is all that is required for the word to get around (perhaps not the Shetty hospital). A central register – you might as well publish the details on CNS.
Once you register, there is no further need to contact the registry. After the data is initially entered, it isn’t going to be removed once you’re deceased. The purpose of the registry is to collect statistical data. I’ve also personally seen the cancer registrar at many locations trying to collect data, so if cancer patients and survivors are willing to register, it would be a huge success.
The PPM should stop listening to their big money supporters who don’t want the registry for selfish reasons and do something to move the country forward. Most developed countries already have a mandatory reporting structure for cancer in place. Everyone wants to know ‘why do we have so much cancer here’……go and ask the PPM why they continue to block the passage of the law that could shed some light on this decades old question.
The registry hired the wrong person without ties or community focus- know your customer has not worked with this posting. Get Heather from BCF out of retirement if you want success with this critical cause.
How difficult it is to assign an identification to each person with cancer, instead of their full name? People of this country must know the cancer statistics. But who guarantees that the numbers won’t be manipulated if they discover some seriously disturbing figures about cancer prevalence in this country. How about people who got diagnosed but left the island for good?
I registered over 3 years ago, but have had no contact since. The Registry should be more pro-active, I might be dead for all they know.