Experts have declared unqualified support for Premier Alden McLaughlin’s announcement of official efforts to create a mandatory national cancer registry, boosted by explicit reassurances over privacy concerns.
Addressing the Legislative Assembly, Mr. McLaughlin devoted a section of his budget speech on Monday to designating cancer as a “reportable disease,” making it obligatory for hospitals, clinics and private doctors to report its occurrence. This would facilitate data collection and boost public health by collating information about the incidence and prevalence of cancer.
He also addressed patients’ long-standing worries about their confidentiality, fearing release of personal information either through oversight or official intervention.
While Ministry of Health legislation sought to make cancer reporting mandatory, he said, it would also “make provisions regarding the confidentiality of the registry.” Legal drafting is still in the initial stages.
“This would be an enormous step forward, an exponential increase” in efforts to track cancer, discerning patterns, charting shifting trends and identifying at-risk groups and behaviors,” said Amanda Franck, cancer registrar at Cayman Islands Hospital in George Town. She and the Health Services Authority have been trying to get legislation, changing it to make it mandatory, while conceding that the effort is “time consuming and complex.”
Jennifer Weber, operations manager of the Cayman Islands Cancer Society, said the move is long overdue and likely to have a critical impact on the community.
“We want to provide the community with what it wants and needs,” she said. “It’s important to everyone and is something we are eager to see happen. Once the public sees what it means, they will be very happy to see the database become available.” A “fully populated cancer registry,” she said, created to the specifics of the World Health Organization, means “we would be able to say what cancers are prevalent, what the percentages are locally, the state of things in the Caribbean. Maybe we would see age groups or diets. If we collect data according to WHO rules, the data is consistent and we can contribute to the World Research Fund,” a U.K.-based network of global charities that fund cancer research and provide information to reduce cancer risks.
As it is, the cancer registry, started in 2010 and comprising about 110 individuals, is voluntary, with information provided largely by those willing to discuss their particulars.
“To have sufficient data, patients have to come forward and say, ‘I want to give information.’ The public hospital has statistics, but we don’t have much from Chrissie Tomlinson [Memorial Hospital] or private physicians, and a lot of people go overseas for treatment,” Ms Weber said. She acknowledged that without full information, “people ask me how much cancer we have, and I can’t really say.”
Elsewhere, she said, cancer reporting is mandatory, enabling public health authorities to gather information, arm the public and allocate resources. In Cayman, however, without it being mandatory, comparisons and predictions are difficult, “almost like swatting mosquitoes in the air.”
In his Monday address, Mr. McLaughlin was blunt: “Although there is already an established Cancer Registry, the reporting of the incidence of cancer has been very poor. This means that the data collected does not accurately reflect the incidence of cancer or provide accurate information regarding the most prevalent types of cancer.
“In order to better target prevention programs, educational efforts and oncology services, we need to have better information regarding the incidence and prevalence of cancer in the Cayman Islands,” he said.
Both Ms Weber and Ms Franck say much of the resistance among individuals to registering is a concern for privacy. Many fear the release of their names and details to doctors, to government, to insurance companies and public health providers. “People don’t understand about confidentiality,” Ms Weber said. “The Cancer Society doesn’t provide personal information to anyone; we don’t give it to insurance companies.”
Ms Franck described the registry’s security, starting with the fact that no names are entered into the database.
“The fears are not justified in the case of the cancer registry,” she said. “We take very good precautions, and no names are used, no ‘identifiers.’ All the information is code numbers.”
Records are entered into a system dubbed “canreg5” – released by the International Association of Cancer Registries in 2010, and downloaded more than 5,000 times in 2011. Used by the WHO, canreg5 is the latest iteration of the database, created more than a decade ago, and is available in English, French, Russian, Portuguese, Chinese and Spanish. Its predecessor, “canreg4,” was released in 2001 and is used in 150 registries in 75 countries.
“We keep [canreg5] on only one computer, and you need a login and password to get into the database,” Ms Franck said. “Once you are in, you need another eight-digit password to see the aggregate data, which is only statistics. It has no names and does not describe who any particular person is.”
She points out that research on trends and numbers “does not require names. No names or [contact] numbers are stored.”
Nor do the registry’s paper files contain names. “All the paper files are locked,” she says, “and I am the only one with a key.” Mr. McLaughlin did not name a finish date for the legislation. However, he said it “should be completed during the course of the current financial year,” which ends June 30, 2014.
In 2010, when Cayman’s registry was launched, “the goal was to have a full database in five years,” Ms Weber said, “and now we are three years in. We have a long ways to go.”
Ms Franck echoed the sentiment: “Setting up any database,” she said, is often laborious and extended. Apart from gathering information, “you have to decide on software, what data might be involved, who will fund it” and who might administer it and have access.
Creating cross-Caribbean collaboration might also prove complicated: “It could take a year,” she said. But making the effort and legislating a mandatory registry, Ms Weber said, is “completely valid and critically important.”