The Ministry of Health and Wellness says it will be revisiting the possibility of creating a mandatory Cancer Registry in Cayman.
The current Cancer Registry, established in 2010, operates under a voluntary system, and doctors are not required to register each new case.
At this year’s Cayman Islands Healthcare Conference, several medical professionals called for the automatic reporting of cancer cases, saying this was vital to getting more accurate insight into the prevalence of the disease in Cayman, and consequently, ensuring a healthcare and public education system is in place to correctly respond to the prevalence of specific cancers.
In response to queries from the Compass on whether government was considering making cancer a reportable disease that would mean cases would automatically be added to the registry, a spokesperson for the Ministry of Health and Wellness said this was an issue that would be considered in the “near future”.
“The revising and revamping of the Cancer Registry is on the Ministry of Health and Wellness’s radar,” the spokesperson said in an emailed response. “Both Minister [Sabrina] Turner and incoming Chief Medical Officer Dr. [Nick] Gent note that it is an essential tool for any developed health care system.
“However, this undertaking will require the introduction of legislation that will simultaneously allow for the data to be captured while ensuring the protection of personal identifiable data, and as such it is an issue that extends beyond mere identification of a case of cancer being notified.”
The concept of a mandatory registry has previously arisen, and a draft Cancer Registry Bill was drawn up in 2014 for public consultation, but was never passed into law, amid concerns over the confidentiality of the information on the registry’s database.
The ministry acknowledged this, saying, “In the past, when the Ministry was working towards this goal, there was some push back due to the lack of understanding of what was being proposed and concerns about data protection and the sharing of confidential information.
“Given what we have heard at this year’s Healthcare Conference, as well as other discussions that have been happening in the community where there is more vocal support for the introduction of a mandatory registry, the Ministry is heartened by what appears to be positive support from a wide range of clinical colleagues and will be revisiting the issue in the near future.”
Cayman’s cancer registrar Amanda Nicholson told the Compass that there are currently around 700 cases of cancer in the registry. Of those, 83 cases were registered this year, though she noted that this number does not include cases that still need to be checked to ensure they are not duplicates.
Important for oncology care
Having data on every case of cancer, together with the specific medical information that goes with it, available to the healthcare professionals would make a major difference to the delivery of oncology care and disease prevention on island, she said.
Currently, written permission is required from anyone who is to be included in the registry.
Nicholson explained that the Cancer Registry operates according to World Health Organization guidelines. All data on the registry is anonymised and protected by a series of passwords, and the information on individual cases is not shared outside the registry.
“It is confidential and data protected,” she said.
She noted that health registries exist around the world.
In the US, for example, hospitals have their own cancer registries in which all cancer cases are recorded. That is shared with and included in the state cancer registries, which in turn feed into the Centers for Disease Control and Prevention’s National Program of Cancer Registries. No information that could identify a specific patient, like his or her name, street address, or Social Security number are included.
Data protection legislation
Since the last time a mandatory Cancer Registry was seriously considered and the draft legislation drawn up, a data protection law has been established in Cayman, something Nicholson says should be helpful in countering concerns over data privacy that were previously an issue.
However, she said, support from the public was a vital element in making cancer a reportable disease in Cayman, and this would mean a concerted effort by medical professionals and others who understand the importance of nationwide data gathering to communicate to the community why such information is needed.
“Everything is data driven, and if you don’t have a basic understanding of how a disease impacts the population, it becomes really difficult to prevent and manage that disease,” she said.
The Cancer Registry, she added, can only give a “snapshot” of cases in Cayman. The whole picture cannot be seen until and unless all cases are recorded.
For example, she said, the single largest type of cancer reported to the registry is breast cancer – accounting for 35% of all cancers recorded. But, she said, the numbers in the registry are likely an underrepresentation of the true prevalence of the disease in the Cayman Islands.
She said, based on the demographics recorded on the registry, women are more likely to report cancers than men, and the Breast Cancer Foundation and the Cancer Society are major advocates of the registry and encourage their clients to have their cancers recorded.
“It’s hard to say what cancers are more prevalent when we are not capturing every case of cancer that is diagnosed… The registry serves as a snapshot of what we think might be going on,” she added.
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