Interview with Liza Bernstein: ePatient, Breast Cancer Survivor, and Social Media Person

I first met Liza Bernstein in Palo Alto at Stanford Medi

I first met Liza Bernstein in Palo Alto at Stanford Medicine X conference run by our partner, Dr Larry Chu. Liza was an “ePatient Scholar”, and she and I discussed what she could bring to Doctors 2.0 & You, as an ePatient with an international background. Liza was born in South Africa, speaks four languages and is very active globally in breast cancer social media. We followed up on Social Media and here we are, preparing for her talk at the Doctors 2.0 & You conference in June. 2013. We love this quote and hope you’ll enjoy the interview below.

“These conversations and relationships on Social Media also helped me find my voice and realize that I could have an impact and be of service.“

Denise Silber: Tell us, Liza, the interesting story of how you became involved with Social Media.

Liza Bernstein: I got involved in Social Media with an experiment. It was October 2010, I was recovering from 15 months of treatment for my 3rd breast cancer, and in between surgeries.  Since 1994, the year of my 1st diagnosis, I had always felt isolated, under attack, voice-less, misunderstood, exploited and more during October, aka Breast Cancer Awareness Month (BCAM). In October 2010, though, for the first time, I was feeling less negative/more able to handle it, but realized that other survivors also suffered during this month that was supposed to be about “helping” us. I decided to go on Tumblr and Twitter and challenge myself to step out of my isolation and post some thoughts/observations about Breast Cancer and BCAM. I did it anonymously because I was too shy and afraid to be fully “out,” but with integrity and authenticity.

Here’s a link to my posts on Tumblr from October 2010: http://itsthebunk.tumblr.com/archive/2010/10 Part of the experiment was to see if I could find anyone out there with anything interesting to say. I researched keywords, found hashtags and in December, found that the San Antonio Breast Cancer Symposium — a leading annual meeting of researchers and doctors in Breast Cancer — had a hashtag and that people were tweeting from and about the conference. I spent hours on the hashtag and had my first real conversation on Twitter. That anecdote is expanded on here: http://itsthebunk.blogspot.com/2012/10/my-epatient-bio-from-stanford-medicine-x.html That conversation led to others, it also led to other conferences (on Cancer, mHealth, etc.) that I engaged in via Twitter as I was not able to travel, and I found the weekly #hcsm tweetchat.

The real, substantial conversations I was having and the real, substantial people I was engaging with inspired me to drop the anonymity. These conversations and relationships also helped me find my voice and realize that I could have an impact and be of service.

DS: How have you seen Social Media evolve over time?

LB: Here’s what comes to mind with this question: In 1999, I was working at GeoCities, one of the online community pioneers. A big meme at the time was “the end of bricks and mortar” with people imagining and fearing a world without “in real life” interactions. Meanwhile, at GeoCities we were having monthly conference calls with 40+ online community members from around the world (some as far away as Australia). We would also fly in a community member each month to join us in the room for the call.  This planted a seed in my mind about the true power and possibilities of online communities. A decade or so later, I saw them realized through my engagement on social media. Speaking on the phone with tweeps, meeting them in person, developing meaningful professional relationships and friendships. It’s through social media and social media alone that I found out about Stanford MedicineX and Doctors2.0 and You.

DS: Where you think Social Media brings its greatest benefit?

LB: Social media is a communication tool, like the telephone and the telegraph. It’s all in how you use it. For me, its greatest benefit is how it allows people to interact directly and quickly around common interests and have a real impact. The #bcsm tweetchat is an example of that.

DS: Liza, thank you for a wonderful interview and see you soon.