Stanford Scope blog: Lung Cancer Social Media contributions to my Medicine X speech

This is a reblog of my post that appeared in the on the Stanford Scope Blog on November 17, 2014

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Tackling the stigma of lung cancer — and showing the real faces of the disease

 

When I first learned I would be giving an ePatient Ignite! talk at Stanford’s Medicine X, I knew I wanted to speak about the stigma of lung cancer. I had frequently heard the first question typically asked of lung cancer patients – “Did you smoke?” – and I wanted to help change public perception of my disease.

I had plenty of material and preparation. I had actively blogged about my metastatic lung cancer journey for more than a year. I had researched statistics and funding disparities. I had gleaned patient perspectives via participation in online support forums and Lung Cancer Social Media (#LCSM) tweetchats. I also had years of public speaking experience, so I wasn’t anxious about getting up in front of an auditorium full of people.

What I didn’t have was knowledge of those who typically attended Medicine X, or how best to connect with them. I had never spoken publicly about lung-cancer stigma, certainly not to an auditorium full of people unfamiliar with my disease. After MedX ePatient adviser Hugo Campos helped brainstorm ideas, I wrote a speech – but it lacked something.

To figure out what was missing, I reach out to the online lung cancer community – patients, advocates and health-care providers I knew from support groups, Facebook, and Twitter. When Chris Draft of Team Draft reviewed my speech and slides over breakfast at Denny’s during one of his trips to Seattle, he smiled tolerantly when he saw my engineer’s fascination with graphs and pie charts. Then he made a point that changed the focus of my entire presentation.

Despite the dire statistics, the public will only care about the number one cancer killer when they can see that these patients could be people they love – a parent, sibling, child, friend – or even themselves. My speech needed to show the real faces of lung cancer, he explained.

So I rewrote the entire presentation and looked for graphics that could help people connect with the patients as well as the facts. I ditched the numbers-based charts for concept-based images. Online patients provided pictures of themselves living life and doing things they enjoyed. A dozen friends from across the online lung-cancer community reviewed the pitch via email or in person. It truly became a collaborative effort.

When I stepped out on the MedX stage that September day, I brought the hopes of many in the lung-cancer community with me. Chemobrain gave me a moment of terror (I lost my place while the slides continued to change every 15 seconds) but judging from the standing ovation the ePatients gave me, I made our point. My Twitter handle was in the top ten mentioned in the #medx stream that day. Tweets from health-care providers watching the speech online and in the audience said it changed their view of lung cancer.  Lung cancer patients -smokers, non-smokers, and never smokers alike – said it expressed everything they wanted others to know about our disease. And as of today, the YouTube video (above) has been viewed more than 1,100 times. But perhaps the most gratifying reaction was when someone friended me on Facebook just to say my speech helped her forgive her father, a life-long smoker who recently died of lung cancer.

This speech represents the best of what an online community can accomplish when they collaborate. The only thing I’d change next time is to avoid delivering it in San Francisco the day before my clinical trial visit in Denver: Evidently butterflies are aggravated by PET scans.