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I am privileged to have been asked to speak at an upcoming local meeting called TEDxOverlake (the site is still without the lineup and structure of the day’s event). This program is one of the hundreds of “TEDx” regional meetings affiliated with the TED (Technology, Entertainment, & Design) programs that I’ve become so enamored of in the last year or two. They involve bringing together a group of people for a diverse array of oral presentations on perhaps tangentially related topics, each one a maximum of 18 minutes, and the antithesis of the “death by powerpoint” standard that has defined and ultimately all but ruined the concept of presentations, in which a speaker reads in a monotone voice verbatim from a text-heavy bulleted slide collection. TED talks redefine presenting as something closer to the art form of storytelling, dating as far back as tribes of people gathered around campfires. It’s just that this campfire is an LCD projector, but the concept is to reinstate the good name of presentations as compelling and influential.

The theme for the conference is learning, very deliberately not restricted to the concept of kids learning at desks in a classroom, but the dynamic range of what constitutes learning throughout our lives. I’ll be speaking specifically on the concept behind GRACE of patients and caregivers learning about cancer through online and other resources, in order to be a direct participant in your own cancer care: essentially “Learning as if You’re Life Depends on It” (did it grab your attention?).

Though I’m used to public speaking, our standard is the usual low bar of being reasonably articulate while talking about scientific ideas and rigidly adhering to what the evidence shows. Speaking in a very compelling way is quite a departure from even being very strong in your skills as a presenter in the scientific/medical scene. So I’ve been thinking and reading and learning about how to deliver a talk that delights and motivates an audience, and it’s given me some insight into communicating in the context of GRACE as well.

The concept of how we present information on GRACE is based in evidence-based medicine, the concept that we make our recommendations for work-up and treatment based on what the data from well-conducted clinical trials tell us. I and the other members of the faculty provide answers based on survival curves and other statistics from clinical trials with as large a population as we can get. But everyone who has been here for a while knows that the results for a population are of only limited value as we see the range of results for the individuals within that population. What really motivates us is what we can relate to: the stories of what happens with actual people we think are, in some way, like us.

It shouldn’t surprise us, then, that patients hearing about the favorable results for someone on the forum who received a certain drug or participating on a clinical trial had a very good result. Similarly, the warnings from someone who had a difficult time tolerating a particular treatment may be very worrisome if we’re scheduled to start that same therapy. We may have learned that, in a broad population, a certain treatment has a low response rate or has minimal side effects, but if we meet someone in the clinic, or in the online community, who has had an especially good or bad experience, it looms large in how we think about that approach: beyond what should count for one person in a large population.

That’s because our brains are built to be receptive to the stories of individual people — especially people like us. We are all drawn to the “before and after” cases of terrific results with cancer treatment or weight loss products or cosmetic surgery, which influence us far more than the curves and statistics showing an abstract measurement of outcomes in 1000 people we don’t see a picture of or know personally. And oncologists and other physicians do this too: when I speak to a group of oncologists, my discussions of agents like Tarceva (erlotinib) or crizotinib include not only the results from big studies but also personal stories of anecdotal cases and images of scans before and after treatment. These cases are more influential to us than the statistics, and for all of our worship of “the evidence”, we are all — patients and caregivers and doctors alike — swayed incredibly by the stories of individual cases that burn indelibly in our memories.

It’s the same pattern throughout our lives. We may have read a favorable review of a restaurant, but if a friend relates a terrible experience, we’ll weigh that far more heavily than a professional critic’s experience. Even more impressively, we care very deeply what strangers think: most of us wouldn’t buy tickets to a movie we’re in line for if the people behind us if several people behind us told us it was awful.

The reality is that stories can’t and shouldn’t replace actual quality data. Without looking at the results of a well-conducted study, we’d never have learned that people were being harmed by taking Iressa after chemo and radiation for locally advanced NSCLC in the SWOG 0023 trial. We’d never have learned that Alimta is an effective therapy only for patients with a non-squamous NSCLC histology. There are many things you can only appreciate from 20,000 feet. And at least as importantly, the FDA and insurance companies use the evidence far more than testimonials to decide whether to approve a particular strategy (though it’s no coincidence that drug companies bring individual patients to speak in heartfelt testimonials to the FDA at hearings to consider whether to approve a new agent — they want to pull at the heartstrings of people who are charged to make decisions based on the evidence).

At the same time, I think it’s helpful for us to try to recognize when we’re being manipulated by these efforts. Sometimes it’s a way to open the door to what the evidence should also show you, even if it can’t make as strong an argument. At other times, it’s an attempt to redirect your attention away from what the evidence should tell you, hoping that manipulating your emotions will override the conclusions your rational brain should provide.

I’d love to hear people’s thoughts on how much or how little the arguments here about “what the evidence tells us” is really important compared with personal recommendations from the doctors based on our judgment, or from other patients and caregivers based on their experiences. How important are statistics versus the stories of the individuals behind them? There are definitely many people who simply don’t care about the evidence compared with the outcomes of a case of someone who once took a particular treatment and happened to do well.

Also, I’m happy to reinforce my own ideas with some poignant stories. I’m looking for examples of people who have experienced a dramatically better outcome based on the new information they have obtained through their own efforts to learn, either here or elsewhere. I hope you’ll share your thoughts and stories with me, either as a comment below or via an e-mail to me at west@cancergrace.org.

PS: the TED talks are recorded on video, so even though the one I’ll be speaking at will be a relatively intimate affair, I’ll post it for everyone to see and forward to 500 of their friends.