Friday, June 30, 2017

Kintalk Gets Families Talking About Cancer

A group of women stand together in support of one another. They are all wearing pink ribbons which symbolize breast cancer awareness.
Photo credit: Shutterstock
Cancer can be a scary disease—and what’s worse, it can be really isolating for the people suffering from it and their families.

Enter Kintalk.

Kintalk, founded by the University of California San Francisco’s Department of Medicine, is more than just a resource for people with cancer: it’s a place where they can gather support and information about the genetic aspects of the disease, as well as getting up-to-date medical research and advice from doctors whose work focuses on cancer treatments. The site also offers information about screening and a secure location to store medical information so that families can connect and get a good understanding of genetic issues that could lead to cancer.

The biggest win for Kintalk, though, is that it offers a secure, easily accessible place where families can upload their genetic information and share it with each other. That means a better chance of earlier cancer detection where there’s a genetic predisposition.

Kintalk wouldn’t exist without generous donations like the one from Thom Weisel, a Silicon Valley businessman with a background in tech. Back in 2013, Weisel met with Kintalk Board Director and gastroenterologist Jonathan Terdiman, MD, about Terdiman’s vision for a centralized, online location for families to share genetic information that could help patients detect cancer earlier and more efficiently. Weisel was on board immediately.

“Although medicine is often notoriously bad at using technology to address problems,” Weisel observed, “this is clearly a great application of technology. What’s really neat is that it can be applied to lots of other areas. Whether it’s a certain type of cancer or some other medical issue, it puts an affinity group—members who share the same issues—in a secure environment, and allows them to talk to each other.”

The medical experts behind Kintalk include genetic counselors, gastroenterologists, oncologists, surgeons, and nurses, all of whom specialize in hereditary cancer syndromes.

Kintalk focuses on two main areas of cancer: hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (a genetic condition that often leads to colorectal or ovarian cancer). About 5-10% of breast cancer and 15% of ovarian cancers are believed to be hereditary, while about one in 370 people have Lynch syndrome. That’s why it’s so important for families with a history of these genetic mutations to communicate with each other and get tested early to nip cancer in the bud before it becomes potentially life threatening.

Kintalk allows families keep in touch with each other—and with others dealing with these issues—and get all the information and support they need to stay as healthy as possible.

The best part about all of this is that the tech behind Kintalk could easily be used to provide support and education around other medical scenarios as well, like Weisel suggested. By connecting fellow sufferers with professional support, Kintalk and any offshoot programs will keep people healthier and more in the know about their options.
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