Meeting cancer patients’ need to know

576

Toronto nurse Lydia Biel was dining in a restaurant when she bit down on something that made her wince with pain. She thought it was a canker on her tongue and that it would go away.

A few weeks later, her tongue still hurt and she had developed a sore throat. This prompted her to see a doctor. The word ‘tumor’ first surfaced during a visit to her periodontist four days later. Biel was still a bit in denial when she was referred to a dental oncologist who took a biopsy.

On June 28, 1999 – Biel’s wedding anniversary – she was diagnosed with squamous cell carcinoma of the tongue, or tongue cancer. She had surgery a month later. She endured a 12-hour operation and 13 days in the hospital.

“I was literally cut from my upper lip down,” recalls Biel. Surgeons split her jaw and took the muscle from her left forearm to replace her tongue. She has a plate with six pins in her jaw. She had to learn to talk again and it was four months before she could return to work.

“When did I recognize myself as Lydia again? It took me about a year,” she says.

Biel is one of more than 50,000 Ontarians diagnosed with cancer each year. They go through a gamut of emotions, from anxiety to moments of levity, and information about treatment is essential for many of them.

One part of the information patients want is wait times for radiation treatment, which Cancer Care Ontario (CCO) provides with help from Smart Systems for Health Agency (SSHA).

“Without question, it’s a lifeline,” says Biel, who required surgery but did not need radiation.

CCO is the province’s authority on cancer information and care practices, and is responsible for monitoring and ensuring the quality of cancer care. It is an important function as an estimated 246,000 Ontarians, 2% of the population, have been diagnosed with cancer in the past 10 years and are still alive. Most were diagnosed with cancer of the breast (21%), prostate (20%), or colon or rectum (13%). About 25,000 cancer deaths are expected in 2004.

CCO plugged into SSHA’s network, like a secure private internet, two and a half years ago. The move has saved CCO $500,000 a year. CCO had considered building its own network but instead turned to SSHA to help capture information about cancer care.

“We use SSHA as a provider of data connectivity,” says James Stang, CCO’s manager of technology architecture services. “It allows us to collect data and to support systems in place through a secure network. It would be very difficult to do this without SSHA.

“We can get a quality of service with SSHA that we cannot get over the Internet.”

More than 80 per cent of Ontario’s hospitals are connected to the SSHA network, which allows CCO to extract information from hospital centres around Ontario, including distant and remote communities.

Using SSHA connectivity, CCO collects and analyzes data about the who, what, when and where of cancer treatment. Collecting statistical data allows CCO to study trends in risk, incidence, mortality and survival. It also allows CCO to report on the impact of cancer and provide useful information for system planners, researchers and decision makers.

In addition to working in partnership with hospitals providing cancer care across the province, CCO manages the Ontario Breast Screening Program, the Ontario Cervical Screening Program, the Ontario Cancer Registry and the New Drug Funding Program, and runs a multifaceted program in cancer research.

“Cancer patients are probably the most motivated on the planet,” he says. “They can develop a large appetite for information. We’re trying to make sure they have that information.”

Biel believes becoming an informed consumer once you have a cancer diagnosis is important.

“Some people need to know and need to have that information,” Biel says. “And they should have access to that information. The information that’s available at Cancer Care Ontario and everywhere else is extremely important.”

As for Biel, she currently works as an occupational health nurse consultant and is now a trained and accredited homeopath. She opens her homeopathic practice in August. She recently passed a health landmark, remaining cancer free for five years.

For more information on CCO, visit www.cancercare.on.ca. To see up-to-date wait times for radiation treatment for various types of cancer, look under Access to Care & Treatment and then go to Wait Times.