The Cayman Islands Cancer Registry and Cayman Islands Cancer Society would like to address the concerns raised in the editorial which appeared in the Compass on June 12, 2014 under the heading, “Cancer registry: voluntary, yes; mandatory, no.” We would like to highlight the tremendous benefit to the public from the collection of such information and we thank the editor for voicing his concerns as we are sure that the public might have similar fears.
Confidentiality should be given the highest priority when handling health information. The cancer registry is completely anonymous, with no names or personal details kept on record apart from the date of birth. In addition, the Cancer Registry database is kept completely separate from the government’s internal IT system.
What is recorded is the type of cancer diagnosed and the age of the individual. The cancer registry is only interested in the cancer type found within the community, the age distribution, and potential locations of where these cancers are occurring. No other personal data is kept on record.
As such, it is impossible for the personal details of individuals to be exposed. Although the concerns raised in the editorial are naturally a grave public concern, data which would reveal a person’s identity is not recorded and therefore not accessible to anyone.
If the system database is broken into, which is nearly impossible, what would be exposed would simply be the types of cancers on record, and the number of times a particular cancer has been diagnosed on the island.
The cancer registry is vital to helping the government healthcare authority and health providers plan health management strategies for patients with cancer. It is impossible to adequately treat, plan, care, or take preventative measures for a problem if one does not know the true extent of the problem.
There are over 200 cancer registry databases worldwide, located in both large and small nations. The first cancer registry in the Caribbean was developed in 1964, and even the small island of Martinique has had a mandatory registry since 1981. Many of these nations work collaboratively to better understand cancer incidence. In 2009 the Pan American Health Organization and the Center for Disease Control met to discuss collaborative activities to support Latin American and Caribbean countries with their cancer programs and cancer registries.
The cancer registry should be viewed no differently than the legal requirements for all to register births and deaths. In fact, the details registered for the birth of a child (name, sex, parents name address, occupation of parents, etc.) are far more open compared to that of the cancer registry.
Cancer survivors, and families of those who have passed from cancer, provide us with a vital source of valuable information which will greatly help us in this fight. We are thankful to all of those people who have already voluntarily provided their cancer case information and we encourage other people to do so.
Amanda Nicholson, Cancer Registrar, on behalf of Cayman Islands Cancer Society Board of Directors and Cayman Islands Cancer Registry Committee.