Editor's Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post:
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Liza Bernstein’s Essay:
In early 1994, when I was newly diagnosed with my First Breast Cancer, I was initiated as an ePatient via a pre-internet social network -- people connecting with phones.
My oncologist put me in touch with a former patient and encouraged me to ask her about her story of surviving cancer. I’m certain she knew that this woman would not only inspire me, but share tips and connect me to resources that would help me on my way... which, of course, she did. That’s how I discovered Harold Benjamin’s book “From Victim to Victor,” and the then quasi revolutionary concept of “Patient Active.” This approach, which my oncologist and her former patient modeled, clicked for me, and thus began my ePatient journey.
In October 2005, when I began the recovery process from my Second breast cancer, I joined a support group moderated by both my radiation oncologist and an oncology social worker. I discovered the power of sharing stories and information in a safe setting and found much solace in my ability to help and inspire people by “just being there” as a 2x survivor.
In December 2010, when I was recovering from 18 months of chemotherapy and surgery for my Third breast cancer, I followed my curiosity about new research at the annual San Antonio Breast Cancer Symposium, explored their website, and found the event’s Twitter hashtag: #sabcs .
I read and read the feed until I saw a statement that intrigued me, at which point I jumped in and asked a question. Next thing I knew a real person from a real, top-notch cancer center took the time to answer me, and my first (of what has now become many) real Twitter conversation about health care began. Here’s that seminal tweet (I’m @itsthebunk):
danafarber: @itsthebunk 1) Fear/denial; some women feel they don't want to know. 2) The recent guideline changes make things less clear-cut. #sabcs 12/09/2010
Those three crucial experiences plus many more are what led me to become an informal patient advocate. I can’t tell you how many cancer patients I’ve helped since 1994. It’s been an ad-hoc process that’s come about organically. Someone refers a friend.... someone asks a question in a support group... my oncologist asks if I don’t mind talking to a new patient...
I’ve been through it all -- each of my cancers were primaries; each was caught early and treated aggressively -- and learned so much. While utterly disrupting my life, each episode has also been an opportunity for growth. I’ve refined my knowledge, learned new things -- coping methods, how to really heal, for example -- and developed my own “tricks of the trade.”
I’m deeply passionate about helping others become well-informed, engaged patients because I know one simple thing: getting a serious disease is horrible, BUT you have choices for dealing with it. If you can become a partner in your own care, your journey will be less difficult, you will be able to find grace and come to peace with agonizing decisions, you will meet some amazing people on the way, and... you will discover how much inner strength you never knew you had.
Now, I use Social Media. I’m connecting with people on a larger scale, loving every second of it and want to do more of it. Maybe even make a living doing it. Every week, I look forward to both the #hcsm (Health Care Social Media) and #bcsm (Breast Cancer Social Media) chats on Twitter.
If I had the means to attend this Mayo Clinic summit I would have signed up when I heard about it! I’m requesting a scholarship because while my health is much better since my most recent cancer battle, I’m still in the process of getting back on my feet financially and professionally.
I’ve worked in the field of Interactive Media since 1991, primarily as a freelancer, and am seeking to combine my life and work experience to help improve people’s day-to-day experiences of illness and interactions with their medical teams. I’m interested in using both social media and mobile applications to this end, and want to keep learning as much about it as possible.
There are ideas I’d like to discuss with experts and peers, such as: how to engage more patients and train them to use social media to improve their health and interactions with their doctors; how to use social media to help regular patients become ePatients; social media literacy. I want to meet people similarly passionate about all of this as well as innovation in health care in general, and to share my insights. I know I have a lot to give and would be honored to be able to.