Posted on July 16th, 2012 by Admin
Editor's Note: Susan Steel is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
Here’s a typical day’s worth of the patient inquiries I receive, which require well researched responses and fine-tuned sensitivity, not to mention legal caution: Are clinical trials really worth it for Stage IV melanoma patients? How do I find the trials fast enough? What questions should I ask to identify the optimal treatment sequence for my disease profile? What tests or scans should be taken to expedite getting onto the trial? How do I find out which institution will get to run the expanded access trial first? How do I set fair expectations for my kids? What is more important, my fit with the doc or the trial? Can you get me on the trial NOW?
Ever since I walked out of brain surgery for metastatic melanoma in 2010, and founded Skin of Steel for patient advocacy with my own advocacy team, I’ve been answering these questions from melanoma patients, families, friends and even doctors, throughout the world. I answer these questions in the middle of the night, before my daughter’s graduation, while I’m receiving an infusion for my own sixth clinical trial, in between panel participation on working group’s conference on immunotherapy guidelines, and after my 6th brain surgery for asymptomatic mets. Perhaps most importantly is the reality that I answer these questions while leading a growing number of volunteers in an effort to push for a demographically rich national tissue bank of fresh frozen primary tumors.
Any knowledge Mayo can share that enables me to support patients in their effort to advocate efficiently and effectively for their own survival will have an incredible impact…on patients, families, care givers, trial researchers and even medical institutions like Mayo. Does Skin of Steel dabble in social media? Sure, when we are not busy helping a patient get on the best fitting trial, or convincing a doc to squeeze one more of our referrals onto a crammed schedule, or referring families to well-researched, compassionate palliative care providers when no options remain. Has Skin of Steel been recognized for our impact? Repeatedly, but we know the newly awarded pro bono hours to rehaul and professionalize our website won’t provide the integrated social media strategy needed to guide struggling patients, vital institutional traffic and donors to our website. In short, we know enough about social media to know that our digital skills and strategies don’t match in the least, our knowledge of how to best communicate patient strategies and mindsets for dealing with metastatic melanoma.
We can’t waste your time describing our experience with social media given that we can actually show it to you. Please take a look at what Skin of Steel does well and how much we really have yet to learn by linking to:
http://skinofsteel.org/3.html (Diane Sawyer clip)
http://skinofsteel.org/30.html (Chicago Briefing on Tissue Bank)
Facebook Page: Skin of Steel Melanoma Campaign
Twitter: Skin of Steel @skinofsteel
Youtube Search: Skin of Steel
These efforts demonstrate bravery in experimentation mixed with a solid dose of lack of knowledge. Clearly, Skin of Steel has a real need to integrate our own knowledge into a compelling voice across multiple platforms. We want to pull our audiences into action. Help us do this and Mayo will be at the forefront of turning patient advocacy into patient action.
The battle we are all fighting right now, to find new genetic tools to fight cancer, requires true collaboration. Institutions like Mayo, need savvy patients to find medical expertise at the right time and in time. Patient Advocacy organizations have credible channels within the patient community. We need to be connected to our communities through the best social media possible. For after all, we know that a patient’s personal story of well-placed trust is a far more effective recruitment tool than clinicaltrials.gov will ever be…even if it were current!
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