‘Taking away that loneliness’: How an AI website is supporting women through breast cancer diagnoses

A new AI website, that got its start in Kitchener, Ont., is offering extra support for people who have been diagnosed with breast cancer and their relatives.

The idea for AskEllyn stems from the experience of Ellyn Winters-Robinson, who was diagnosed with multifocal breast cancer in 2022. Following the diagnosis, she went through a double mastectomy and several rounds of chemotherapy and radiation.

That journey inspired her to write and release a book called Flat Please: Hold the Shame.

“The intention of the book was really to be that girlfriend’s companion guide,” Winters-Robinson said.

“It was there to say ‘hey, I get you, I know what you’ve been through. I’m going to go with you on this journey every step of the way.’”

That book caught the attention of Patrick Belliveau, the co-founder and CEO of Shift Reality, a tech start-up in Kitchener.

Together, they came up with the idea of AskEllyn.

Winters-Robinson worked with Belliveau, Chris Silivestru and Ryan Burgio to create the question-and-answer platform.

“It’s really just taking away that loneliness that comes with a diagnosis or comes with a family diagnosis,” Winters-Robinson said.

The site is easy to use. Users type their comments or questions into a text box, and they’ll get a response from her point of view.

“[AskEllyn] is context locked on Ellyn’s book, so it’s basically bringing her book to life,” Belliveau said. “Imagine, in the simplest terms, you can actually talk to a book. Fundamentally, that’s what’s happening.”

The site can be translated into almost every language and can communicate at the user’s level.

It’s a place for people to ask questions they may have forgotten to ask in a medical appointment, or are shy to ask people they know.

Some question examples given by the creators are: ‘How do I tell my kids?” Or, “What should I bring to my chemotherapy appointment?”

“It’s always going to try to make you feel validated,” Belliveau explained.

Winters-Robinson said it’s a tool she would have found helpful during her own experience with breast cancer, despite having friends to help her through her journey.

“That ability to bottle up that wisdom, whether it’s in the book or in AskEllyn, I think will be valuable to others. I certainly would have used it,” she said. “AskEllyn is just there to comfort everyone really, and to provide that empathetic ear, that non judgmental sense of ‘here’s my take on things.’”

MEDICAL OPINION

The team is clear that AskEllyn does not replace medical experts.

The site has a disclaimer on the bottom that says: “no content produced or presented are a substitute for professional medical advice, diagnosis or treatment.”

One registered social worker, who works closely with cancer patients at Cambridge Memorial Hospital, called it a great tool, as long as patients still rely on the medical advice from their care team.

“Where I saw myself kind of using it… is when people are reluctant to get into groups right away, or access resources – people, sometimes, they don’t want to reach out,” said registered social worker Roxanne Pendergast.

“I think I might suggest it to people who had questions like: ‘How will I feel? How will this medication impact me? What could I expect?’”

After visiting the website herself, Pendergast said it offers appropriate and good information.

NEXT STEPS

AskEllyn officially launched at the end of October, and so far, the creators say things have been going smoothly.

Their hope is to continue evolving the breast cancer tool, and then expand services in the future to offer platforms for different diseases and illnesses.

“People have been coming up to me and saying: ‘Hey, my dad has dementia, or had prostate cancer, can you build a tool for that?’” Belliveau explained. “What I think we didn’t understand at the time is that the thread we pulled at was support gaps that exist in our communities and we didn’t have a great way of solving it until now.”