Belize Cancer Society working on creating a Cancer Registry
It’s not difficult to find someone who will share with you a story about cancer. Whether, it’s their personal battle to overcome the disease, a relative or friend recently diagnosed or even the unfortunate stories of those who lost the battle. Every year, thousands of Belizeans join in the Cancer Awareness walk to show their support for victims of cancer. Even with heightened awareness, there still is not a clear picture of what the true situation of cancer is in Belize. Healthy Living finds out more about the cancer registry.
Marleni Cuellar, Reporting
The cancer registry is a medical database that should register all cancer related information in Belize. It would include information about the occurrences of cancer, the types of cancers that occur and specific locations within the body, the extent of cancer at the time of diagnosis, and the kinds of treatment that patients receive. It has been over a decade since Belize has been working on establishing its registry. However, there are still significant challenges with the process. Pathologist, Dr Hugh Sanchez, has been an executive member of the Belize Cancer Society for the past sixteen years. He explains why having an accurate cancer registry is important for Belize.
Dr. Hugh Sanchez, Pathologist, Member, Belize Cancer Society
“The registry, the data collected, is important for strategic planning for us to know where to spend the limited resources if we want to combat this disease. And the information needs to be accurate and to do that; the methodology to get the information is one of active data collection. You can do it retrospectively as well. But whichever model you use, the active participation of a committed person to collect the data and to put it in whatever software—which they have many of those—to compute and to use epidemiological profiles to tell you exactly what is going on.”
Cancer registries are use to monitor trends in cancer over time, determine patterns in different populations and will help in setting priorities for allocating health resources. Guiding research is also an important output of having an accurate registry. According to Dr. Sanchez, without the data available; it is only possible to look at trends in cancer diagnosis.
Dr. Hugh Sanchez
“We have to look at trends. So we collect all the data and then we assess it and then we look at the trend. From my experience, the trend I come up with based on the last sixteen years based on the last ten years as collecting data as accurate as we can, for those scenarios that come to Karl Heusner or that uses the government lab—that’s where I work out of—then the trend I have is that for female: we have the cervix, we have the breast, we have the colon. For male: we have the prostate, we have the colon. We have stomach sometime. And in that, we the leukemia’s, the lymphomas; those are the ones that are of importance.”
Dr. Sanchez believes that the data collection needs to be done more proactively and also be centralized. Dr. Sanchez advocates for Cancer registrar and making cancer a reportable disease.
Dr. Hugh Sanchez
“What I have found with us is that we talk a lot, we plan a lot, we launch a lot, but we don’t get the foot soldiers on the ground to get the work done. It is something that you need to actively collect, you need a person who will take it as a challenge and accomplish it. The problem we have in Belize is that Belize is a big country, but be that as it may, we can do what we call a local registry and extrapolate for the rest of the country. To effectively gather information, you need to have a center that has the diagnostic capabilities. So you wouldn’t really want to go to P.G. for example and set up a cancer registry in P.G. So in the City where we have one two three hospitals, this is a good place to start getting the registry in place and the information because we have all the diagnostics: Cat-Scan, Radiology, ultra-sonography, specialists, the hospitals—we can get the information. Now having the information is one thing. For it to be useful, it needs to be location specific. What I mean by that? If a person lives in P.G., refer to Karl Heusner and the diagnostics is made; where will you chart that case? As a P.G. case or a Belize City case? Those are things that we need to iron out. The rule we use in Jamaica is that you need to resident for at least six months to be a part of that locale.”
Another, common challenge is confidentiality. Clinical Director of the Belize Cancer Center, Nurse Ivorine Bulwer says they are preparing for a re-launch of the Cancer registry with the Ministry of Health. They are hoping the new guidelines will help in alleviating some of the challenges they have been facing in data collection.
Nurse Ivorine Bulwer, Director of Clinical Services, Belize Cancer Center
“The issue of confidentiality is, as may be aware, to collect data, personal information, there is always a concern about the issue of confidentiality. Hence with the re-launching; that’s basically an issue getting the information. We do have information from the public sector; not form the private the sector. And people go to the private physician and they are expecting confidentiality of information. And hence, it’s important that with the protocol for the guidelines for the collection of information for the registry, there will be limitations with who manages the information. That will be part of the protocol guidelines. It is important to look at issues as it relates to reportable conditions; however, we need to look at individual fundamental human rights. And at the same time we need to create that balance between the collection of accurate data and one of the important thing is that we have got to do more public awareness; sensitize individuals, sensitize health professionals and partners in health as it relates to the importance of collecting the data because it is necessary for planning, for program planning; it is necessary to ensure that we have the adequate services; it is necessary for us to have the adequate professionals trained to provide the services.”
There is data available in the Cancer registry since 2004; however since cancer is not a reportable disease; there are certainly more cases than have been recorded.
Dr. Hugh Sanchez
“The purpose of the registry is to give you concrete, specific, objective data to base how you will invest your screening money to get the best return for your investment—that’s the purpose of the registry. And for it to be accomplished, we need to have everybody on board: the doctors, nurses, the diagnostics—that is x-ray, ultrasound—and even the patient; because not all diagnosis are done here, but we need the information.”
Nurse Ivorine Bulwer
“Once we can obtain that information, that data, you are looking at proper planning, the establishment of programs. We can even see out of that within our public health clinics; our rural health clinics. There may be screening days assigned. We have maternal and child health, post natal clinics. There might just be screening days assigned. But it is important that we need data and we need to implement the relevant services to address areas of concerns. To have clients recognize the importance of a registry and at the same time to want to participate in the collection of those data and sharing the information with the Ministry of Health. At the same time it is not only for them, but for the future. We are looking at the families, we are looking children, we’re looking at having a healthy Belize.”
A date for the re-launch of the cancer registry has not been set as yet and it will be managed in the Ministry of Health’s epidemiology office.