Cancer registries to join forces to fill data gap

Amanda Nicholson, Cayman Islands Cancer Registrar

(CNS): As the Cayman Islands health services continues to struggle to get a clear picture local cancer rates, after government attempts to mandate a register failed due to fears that insurance companies would misuse the information, the local voluntary registry is joining a regional hub to improve statistics. The Caribbean suffers from a lack of high-quality cancer data and experts believe the collaboration will help. The Caribbean Public Health Agency has said that it is well established that high-quality population-based cancer registration is pivotal to cancer prevention and control.

Efforts failed in 2015 to pass legislation that would mandate registration of cancer patients so that health experts and researchers could understand what anecdotally feels like a high rate of cancer in our community, measure trends and patterns, causes and survival rates. Resistance from the community stopped the law, mostly because of fears that information would not be confidential and insurance companies would use it to withdraw cover or massively increase premiums.

While the voluntary register is collecting some data supplied by around a dozen local medical professionals, there is still almost no information available about cancer trends in Cayman. But Cancer registration is limited across the English and Dutch speaking Caribbean, leaving a paucity of national and regional information on the current and future burden of cancer.

The aim is to implement a regional registry at the Caribbean Public Health Agency (CARPHA) headquarters in Port-of-Spain Trinidad and Tobago that will help collate data, provide technical expertise, advocacy assistance and support cancer registries. It is hoped that this will strengthen cancer surveillance by building capacity for cancer registration in the region through technical support, training, networking opportunities and collaborative research.

“Once implemented, this hub could provide the Cayman Islands Cancer Registry with the opportunity to work with some of the top health organisations in the world and receive support and training from the very best in the field,” said Amanda Nicholson, Cayman Islands Cancer Registrar.

Local efforts to promote Cayman’s voluntary cancer registry continue. Nicholson will make a presentation about its relationship with the health of Cayman’s population at the educational forum, “Advancements in Genetics, Genomics & Cancer Management”, which will be held on 9 March at the Westin, Grand Cayman. Officials said the forum will feature the most relevant updates in the ever-expanding fields of genetics and genomics and is designed to foster dialogue between healthcare providers to develop strategies that contribute to better care for patients.

Meanwhile, the regional hub is part of a wider collaboration with several international health organisations. The International Agency for Research on Cancer (IARC) will lead the initiative to develop and implement the Caribbean Cancer Registry Hub, which will be one of six in the region and is intended to address the shortage of information.

“The IARC Caribbean Hub will fill a critical gap by serving as a reference centre of expertise, directly supporting countries in the region to strengthen cancer data,” said Les Mery, IARC, Lyon, France. “This is especially important as such information is the basis for effective prevention, treatment and supportive care programmes. Together with partners, we are creating local capacity that will ultimately help to reduce the burden of cancer in the Caribbean.”

If a cancer survivor wishes to register to the Cayman Islands Cancer Registry, they can contact Nicholson 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. Visit www.hsa.ky for more information and services offered at the Cayman Islands Health Services Authority.