According to a Manitoba Government news release, there are on average 66 new cases of cervical cancer reported each year in the province. Almost half of the women diagnosed did not have regular Pap smears, a test which has proven to be successful in the prevention of cervical cancer.
Recently, CancerCare Manitoba purchased ISIS software from Artificial Intelligence In Medicine Inc. (AIM) to help reduce the incidence and mortality from cervical cancer in Manitoba. AIM’s Integrated Surveillance Information System (ISIS) is a patient-based registry that is used in Manitoba to hold Pap smear results and related data for all women.
The Manitoba Cervical Cancer Screening Program (MCCSP) was officially launched in October of 2001. “The cervical cancer screening program had been in proposal form with our government for a number of years. They had made a number of public announcements on issues related to women’s health, that they were going to look into cementing this program, and nothing happened,” says Brenna Shearer-Hood, Program Manager of the Manitoba Cervical Cancer Screening Program (MCCSP).
“Then health critic Dave Chomiak, from the NDP, who is now the Health Minister of our province picked up the topic in June of 1999 and said the program had to come from proposal stage to reality. He started phoning the newspapers and a number of the women’s advocacy groups, and lo and behold, a few weeks later the government announced funding for the program.”
An international request for proposals for a registry was issued in May 2000, and AIM was the successful respondent. In November of 2000, AIM began the customization of their modules, and the system went live in October of 2001. “That is very fast,” says Victor Brunka, Account Executive at AIM. “A project of this magnitude would usually take two to three years to complete.”
The core concept underlying ISIS is an automated patient-based registry that can be integrated with other databases and clinical facilities to help in the early detection and tracking of disease for prevention and follow up. In Manitoba, this means that all Pap smear results are collected centrally, forming a database for the management of the cervical screening program.
“The ISIS system aggregates the cervical cytology results produced in all laboratories and then reviews the data and establishes what needs to be done on the basis of certain parameters,” says Dr. Peter Brueckner, CEO of AIM.
Not only are results stored in one location, making it easier for doctors to access a patient’s test history, but the ISIS system is also programmed to follow-up abnormalities, and send out routine reminders as well.
“Without that (follow-up), it’s only half a system,” says Brunka. “No matter what you’re screening for, some results you find in a lab test will indicate ‘phone this person and get them in here this week.’ Others will indicate ‘these people should be seen in three to six months.'”
“The challenging part is that those rules change. This is a dynamic system. Every six months to a year, the people in charge of the system get together and discuss the latest scientific findings, and decide whether any of the rules should be altered. So the system is sending out follow-up reminders on a dynamic basis. Whatever the current rules are, that’s what should be taken into account.”
Importantly, all data collected according to the previous rules are retained for reference in the original format, and are not deleted. Adding to the appeal of the ISIS registry is its relatively low-maintenance requirements. “The system is so highly automated that it takes a relatively small staff to run, and for the volume of data that is processed and stored, it’s highly efficient. Much of the design work went into ensuring it could perform automatically,” says Brueckner.
Patient privacy was also of concern in designing the ISIS registry. “The system is run on a virtual private network so that it’s very difficult for somebody else to have access to the data. More importantly, an Information Manager’s Agreement is required from all entities that have access to the data, further safeguarding its confidential nature,” adds Brueckner.
In Manitoba, Shearer-Hood hopes that more women start coming in for Pap smear tests. The MCCSP’s long-term goal is to reduce the incidence of mortality from cervical cancer and Shearer-Hood hopes the ISIS registry will help to do so by catching more abnormal test results.
“At first we may see an increase in high-grade pre-cancerous lesions, and that’s what we hope for. We want to catch them, and make sure these women go for treatment,” she says. “There will be a blip, and that’s good.”
Patients in Manitoba were made aware of the registry through a public information brochure developed by the MCCSP. Included in the brochure is information on the registry, what happens with test results, what information is stored, and how women can opt out of the program.
“They (the patients) are more aware than anybody about the system,” says Shearer-Hood. “So far we’ve had 2 women opt out, and that’s it. It’s been very positive.”
Ultimately, what both the MCCSP and AIM are hoping to avoid are unnecessary tragedies. “We had a case in Manitoba a number of years back where a cytology report was filed in a health record and no one acted upon it and the woman ended up dying of cervical cancer. The family sued successfully,” recalls Shearer-Hood.
Thanks to the follow-up reminders, the ISIS system is expected to assist in eliminating further unnecessary loss of life. “We can only ask (that women be tested), we can never force them to be tested,” says Brunka. “ISIS ensures that pre-cancerous conditions are followed up with a woman’s physician for appropriate treatment. The very, very important thing is that nobody falls through the cracks.”