Website sheds light on life of a prostate cancer patient

The Men’s Health Research Program at UBC recently launched If I Were Tom, an online resource that supports men living with prostate cancer. The interactive website features a series of videos that follows Tom, a man diagnosed with prostate cancer, and asks viewers what they would do if they were Tom as he makes important decisions about how to deal with prostate cancer.

While the website provides videos to educate visitors about key phases of dealing with prostate cancer, the emphasis of the website is to equip men who may not seek medical advice from traditional places to make informed decisions. Instead of a library of information, Dr. John Oliffe, professor in the school of nursing and lead investigator of Men's Health Research, likens the website to a prostate cancer support group.

“[The website] promises not to tell you what to do,” said Oliffe. “The whole way along what it asks you to do is look at Tom and look at the video, and decide what you would do. There [are] no wrong answers in this, so it is about you coming to a decision for you.”

Providing support to men dealing with prostate cancer beyond the initial diagnosis and treatment is an important part of the website because approximately 95 per cent of Canadian men diagnosed with prostate cancer will survive for at least five years according to the Canadian Cancer Society.

“Prostate cancer is something that a lot of guys live a long time with and by virtue, by extension of that, they live with a lot of morbidities. It can be around erectile dysfunction, it can be around urinary incontinence and so their lives change.”

In addition to providing a place for men with prostate cancer to privately turn to for support, the fact that If I Were Tom is a website means that Oliffe and his team can observe patterns in web traffic to adjust videos and content if visitors show interest in a particular topic on the site.

However, the anonymity provides challenges with following up with users to measure the impact of the website, said Oliffe.

The project was funded by the Canadian Institutes of Health Research, but whereas other projects may wither after funding ends, the website is being gifted to the Prostate Cancer Foundation BC, including 100 videos that have not been released online yet, which will ensure that the website will be updated.

“The most rewarding part is that it looks like we have built something that will have a life well beyond the grant that built it. Oftentimes one of our biggest challenges in research is that you get the money, you spend it on something, you build it and then when you have got no money, it has got tumbleweeds running through it because they just they get old pretty quick.”