How one top cancer-care centre in Canada turned to the Internet to bring together patients, survivors and healthcare professionals

Karen Portelli was diagnosed three years ago with breast cancer, and one of the first lessons she learned was that she had to become an advocate for her own healthcare. "I had to be knowledgeable about my own body and what was going on with me."
    The 43-year-old Toronto resident’s journey with cancer actually started three years prior to her diagnosis, when she found a lump. Her doctor told her that at 37 she was too young to have breast cancer, and remained unconcerned when another lump appeared the following year. It wasn’t until she reached 40 that her doctor ordered a mammogram, and not until a surgeon recommended a biopsy that she was diagnosed with stage two cancer. "I later learned, going through chemotherapy, that probably 80 to 90 per cent of the people sitting in those chemo lounges were told the same thing by their doctors, until it had advanced to a ridiculous state," she said.
    Portelli started teaching herself about breast cancer, an education that eventually led her to an American Web site that had useful medical information but also had a lot of content that did not apply to her as a Canadian. "The Web site was really valuable and the only thing I thought could be different was if we had one in Canada with Canadian content," she said. "While the scientific information was absolutely incredible and I was sucking up every bit of it, the resources and the healthcare system and the things they talked to outside of the science didn’t apply to Canadians."

This experience is one reason Portelli, other cancer survivors and healthcare professionals are excited about Caring Voices, a newly created online information and collaboration resource from Toronto’s Princess Margaret Hospital, one of the leading cancer-care centres in Canada. The hospital and Toronto-based Klick Communications started working on Caring Voices earlier this year with support from the Princess Margaret Hospital Foundation and The Quilt, a project that raises funds to support breast cancer survivors and their families. In May, the hospital and Klick conducted a two-month pilot project involving members of the hospital’s healthcare team and some 50 cancer survivors, including Portelli, and plan to launch the site imminently. 
    Caring Voices (www.caringvoices.ca) will be a comprehensive library of information about breast cancer, covering scientific advances, detection and diagnosis, treatment and how to find support. It will also address issues such as quality of life, sexuality, nutrition and even complementary and alternative medicine. The hospital is filling the resource centre with articles by on-staff professionals, who will continue to add to the library on an ongoing basis.
    The library is step one. Step two is the building of a community. Through chat sessions and newsgroup-style forums, Caring Voices will bring together patients newly diagnosed or undergoing treatment, those who have been through the experience, family members of those with cancer and members of the healthcare profession, including oncologists, nurses, surgeons, social workers, physiotherapists, dieticians and others.
    The chats and forums will let healthcare professionals share information with cancer survivors, and let those survivors question Princess Margaret’s staff about the articles they’ve read in the resource centre. Newly diagnosed patients can learn about the medical procedures they’re about to experience, including accurate information from experts at the hospital, plus insight into the patient experience from survivors such as Portelli. This interchange is intended to offer support and encouragement to people experiencing a very difficult time. 
    In addition, a system developed by Klick allows the Caring Voices site to learn from its users—to, for example, link cancer survivors who have similar profiles so they can share experiences with someone who is going through the same issues, or to recommend additional reading to a patient based on what other patients with similar profiles have found useful.
    In the process, it’s hoped Caring Voices will enable those with cancer to make more informed decisions about their treatment, and give them the information, support and confidence they need to live with a disease that, according to the Canadian Cancer Society, will affect one in nine Canadian women at some point during their lives.

"Caring Voices is designed to help us empower patients and stay connected with them throughout their care," said David Wiljer, director of knowledge management and innovation at Princess Margaret Hospital. "Our survivorship program takes the view that patients are survivors right from the day of diagnosis, and we have to look at their care as a number of different phases in a journey—right from the moment they’re diagnosed, through treatment and post treatment, and address all of the issues."
    Scott Secord, who manages the hospital’s breast cancer survivorship program, points out that Princess Margaret has treated cancer patients from across Ontario, and that makes an online community such as Caring Voices invaluable. "We’ve had patients from as far away as Thunder Bay," he said. "Hopefully in most communities there’s an array of face-to-face contact, whether it’s a support group or a community organization that provides support. But not every community has that to offer. For people living in isolated communities, or who are feeling exhausted from treatment, it’s much easier to be able to access support right from their living room."
    Dr. Pam Catton, the survivorship program’s medical director, said Caring Voices should play an important role in the medical community’s ability to stay connected with patients. "As health professionals we’ve been so focused on diagnosis and treatment," she said. "But in the last 30 years the cure rates have gone up and up in breast cancer, and we’re now dealing with a large group of people who are left, following their treatment, with all sorts of consequences of that treatment and nowhere to turn."
    As a cancer survivor, Portelli expects most people living with breast cancer will find the library a welcome resource. "It’s already starting to provide a phenomenal amount of information that will put a lot of newly diagnosed cancer patients at ease," she said.
    Importantly, that information is being vetted by one of the top cancer treatment centres in Canada. "You could sift through literally thousands of Web sites and try to discern for yourself whether a site is reputable," Portelli said, whereas "this is a site that’s going to be constantly updated and constantly monitored, so you know you’re looking at current and accurate information. Plus, you can talk to other survivors and ask, ‘Have you tried this? Have you tried that? Is this good? Is that good?’ because it’s interactive as well as informative."
    From the survivorship program’s perspective, this is exactly what is supposed to happen. "We see the patients as experts in their own care," Secord said. "We want to encourage patients to be more active and ask more questions."
    Catton added that while the online forums and chats are venues for open discussions, having a member of Princess Margaret’s staff moderate them ensures information can be clarified if necessary. "I think the three-way relationship between an experienced patient, a novice patient and a health professional creates a very good all-around discussion," she said.

The site’s ability to learn, a key feature that promises to make Caring Voices more than just an online community, is powered by technology developed by Klick. "(The site) is highly innovative in the way that it learns from users and is able to bring people together in a safe and moderated environment," said Klick Communications president Lee Segal. "In effect, what the technology does is profile these individuals and learn about what they’re interested in."
    Klick’s technology can, for example, learn what results people spend the most time reviewing after doing a search. Then, when another user with a similar profile performs a similar search, it can modify the results to make more informed recommendations. "The more people use the tool, the more it will learn about their specific interests, and the more effective it will be at actually recommending to these individuals what’s going to be of interest to them," Segal said.
    Klick’s solution has other applications as well, he said. "The technology itself can be tailored to help other organizations and groups get unique access to individuals who would otherwise be difficult to reach."
    Reaching survivors and sharing their experiences is part of the healing process, Portelli believes. "It’s incredibly healing. It empowers both sides. For new patients, it empowers them to know that there’s something they can do about their disease. And it empowers the person like me who has been there, to feel that I have done something to give back—that this whole road hasn’t been for naught. I think that a lot of people who have gone through this disease want to give back and this is a way to do that."
    For that reason, Portelli is very excited about Caring Voices’ profiling ability. "Unlike any other Web site I’ve seen, this one is unique in that you can put in your profile and ask to link up with somebody of a similar circumstance," she said. "You can really specify and narrow it down to try to find someone almost exactly like you who is undergoing the same thing. And then you can launch a friendship with that person, and share experiences specific to you."