The Cayman Islands Cancer Registry has collected details of 60 cancer patients or survivors, but it could be more than three years before the data can produce effective analysis of the rate of cancer in Cayman.
Cancer registrar Milena Conolly said the response to the registry, which was set up last April, has been positive. She also has data from many more people, which is awaiting input.
“We don’t expect we will have sufficient data for another three years because we have to think about the time it will take to get people registering and feeling comfortable about registering,” she said, adding that the quality of the data is likely to only be used after three years, to give enough time to work on areas that need improving and to encourage everyone who should be on the register to be included.
“The data is only useful if it is solid data. At around five years, you are looking at a good registry that is actively collecting useful data that people will feel comfortable utilising,” she said.
The registry recently released a detailed form for patients, cancer survivors or the next of kin to fill out. Once this has been completed, it gives the Cancer Registry permission to seek further medical information relating to a patient’s cancer from his or her doctor or medical facility.
“We have had quite a good response so far. A lot of those people are not quite aware of the registry and where to come to use the registry just yet. We have collected information from different sources we have already, including the Health Services Authority, Chrissie Tomlinson Memorial Hospital and the Cancer Society,” Ms Conolly said.
“We are still in the process of disseminating the information to the physicians so they can learn how to use the forms and what kind of information we are collecting. In the forms filled out by the patients, they say who their physicians are and I can contact the physician directly. People have to give permission,” she said.
The Cancer Registry was set up in a collaboration between the Health Services Authority and the Cayman Islands Cancer Society.
“We are hoping that as many people feel comfortable and confident enough to come forward and get the information to us. Without them coming forward, we will not be able to compile the statistics we need to try to make some change and give them the service they need.
“How can we convince people to give of themselves and their money and time to help people suffering from cancer… if you don’t know what the problems are and how people need help,” asked Ms Connolly.
However, she admitted that some people who had been asked to fill out the forms had questioned the confidentiality and security of their information.
Cayman has no personal data protection legislation.
To help ease concerns, Ms Conolly said she is the only person with access to the information in the registry, and neither the Health Services Authority nor the Cancer Society could see those details.
Instead, she collates the information and can relay aggregated numbers, but keeps the names of the individuals who have filled out the forms and been entered into the registry secret.
Jennifer Weber, operations manager of the Cancer Society, which pays Ms Conolly’s salary, said: “I could not say to her ‘Give me a report about everyone with breast cancer so we can contact everyone about a new project we’re doing’. She can give me the number of people with breast cancer, but not their names or other details.”
Ms Conolly said hard copies of the data are kept in a secure location, in a locked filing cabinet that is impact and tamper resistant.
“I want to drive home to people that their data will be protected. I am not personally interested in people’s names or what their conditions are. I am concerned with getting that cancer data so we can really make a difference and help to stop people from having to go through the trauma of cancer, and so they will know where to go for certain services and to enable us to answer the questions about cancer that have been challenging us for years.
“I am a female who has grown up in this community. As much as anyone else, I want to know what risk am I at. Does where I live affect my chances of getting cancer? I have these questions as well – and this registry can give us answers,” she said.
The registry includes historical data dating back up to two years. “This is just the starting point,” said Ms Conolly.
The information contained in the registry is based on the global standard set by the International Agency for Research on Cancer, known as IARC – an organisation that sets the guidelines for international registries. The Cayman Islands Cancer Registry database and software used to collate the information is an IARC database, which has been in place since January.
“The data we collect is not just going to be used in the Cayman Islands, but will be able to be compared with other countries, other Caribbean nations, on a worldwide scale. If we follow the same rules and regulations in the collection process as every other registry in the world, the better we can do that and the more accurate we will be when we submit the data to the IARC group,” said Ms Conolly.
Cayman is one of the few places in the Caribbean to have a cancer registry – Trinidad has one, Barbados started one last year and Bermuda has a hospital registry.
Supporting the registry is a contribution everyone in the community can make by encouraging a family member, or friend, or neighbours with cancer to give their details to the registry, said Ms Weber. “Everyone can help,” she said.
One of the challenges of collecting cancer information in Cayman is that many people are treated for the disease overseas. If they go to a country that has a cancer registry, such as the United States where individual states have registries, there is a chance that their information could be duplicated – once in the US and once in Cayman, therefore, skewing the data.
Ms Conolly said efforts were under way to work out an agreement with some overseas hospitals, especially those in Florida as many patients from Cayman attend facilities there, to arrange for information on cancer patients to be sent back to the registry in Cayman.
Another advantage of getting data in the registry from patients who seek treatment overseas is it can give the Health Services Authority a better idea of what kinds of cancer treatments need to be provided on Island, she said.
To gauge more information about the rate of cancer in Cayman, a question about cancer was included in last year’s census. That question asked if any member of the household had been medically diagnosed with cancer, as well as other diseases.
Ms Conolly says once she has that information, she will be able to tell if the eventual numbers in the registry match the census figures.
She said she realised that some people may not be able to travel to her office at the Cayman Islands Hospital in George Town to fill out the Cancer Registry form, but said she was willing to pick up the forms from them if they contacted her.
Anyone wishing to give their cancer-related information to the registry can contact the Cancer Society on 949-7618 or email firstname.lastname@example.org or get in touch with Ms Conolly on 244-2560 or email email@example.com.
They can also visit the Cayman Islands Hospital and ask for the Cancer Registry or speak to their doctor about how to pass the details along.