Andrew hosting a recent town meeting
I have been involved in communications for patients with serious conditions since 1984 and became a patient myself, with cancer, in 1996. One thing that has really bugged me is that many people who have funded (or produced) programs for patients have assumed what works best is a watered-down version of the style of education for doctors. Heavy-duty clinical and a lot of slides and text. My wife Esther and I won national awards from medical journalists starting in the mid-’80s, because we didn’t take that approach. We have always featured real people, and any event we have ever produced has been an open dialogue and not like a college course. We have also put an emphasis on patients connecting with patients and now with care partners connecting with others, too. I am happy to tell you from the survey results of recent town meetings in lung cancer, melanoma and chronic lymphocytic leukemia that the in-person and online audiences, in scientific surveys, have resoundingly endorsed this approach—and they want more.
Last week I was critical of brief television ads and the associated slick advertising approaches that oversimplify discussion about serious conditions. My experience is patients and family members want the whole story in longer formats and with ongoing information over time. They want to regain control of their health. They are thirsty for knowledge. I have spent three years in Europe and despite what some European pharma people have told me, it is no different there. People are tired of any doctor talking down to them, withholding information or claiming they know what’s right when a little investigation or a bad result proves they were wrong. Our key message echoed by every top doctor and advocate we feature is you have to go the extra mile, “get smart,” when you or a loved one is diagnosed with a serious condition. The first answer or the simple one may not be the best, and the price of getting it wrong is high.
So where does that leave us? Since 98 percent of the town meeting attendees loved our open discussion format, what I call “Oprah for Cancer,” we are planning more of these in-person and online town meetings. Look for us before year’s end in Chicago, Houston, Palo Alto and Seattle at least and across a number of cancers. We are working hard to get financial support right now. And we are determined to head east. In Europe, we are cooking up events in London and in Germany. True dialogues between world experts, patients and caregivers. No script, few slides, no marketing hidden agendas. Just true communities devoted to the person with the diagnosis achieving better health.
We’ve been extending this approach online even when we don’t get to meet in-person. Stay tuned for more “Patient Café™” events from our partner, the Patient Empowerment Network. This is where a small group of patients, with audio and video, get together online with a conversation led by an experienced patient. We’ve already produced several in CLL, and more are coming. The video clips will be for all to see. Again the idea is an informed conversation. No speeches, no “webinars” (I hate that term!).
At Patient Power, we’ve been working hard to make our programs and offerings much more like what you experience in popular media and apply this style to specific serious conditions. If you watch CNN and Fox News, these days no one gives a scripted report. The correspondents and “experts” have a conversation with the hosts. And they don’t just talk about the facts, they always discuss how the “news” affects people’s lives physically and emotionally. That’s good journalism today, and that’s what we do for you for your specific condition.
Here’s a great example with a doctor, who is a cancer patient himself, about lung cancer; Here’s another one with a woman with CLL. Both are informative and inspiring conversations.
Just a couple more notes from those recent surveys. Over 40 percent of attendees will speak with their doctor about what they’ve learned, most everyone rates what we’ve done either good or excellent (mostly excellent), and the vast majority feel more confident now that they have learned more. That does my heart good!
I don’t know Oprah Winfrey, but I am betting she would say “right on!” to what we are doing for you. And I hope you do, too. I also hope that the other folks who spend resources on patient education will “get it,” too.
Of course, we are not at all perfect, so feel free to tell us how we can improve. People talked back to Oprah, and you can talk back to me!
Wishing you and your family the best of health!