As I’ve written before, my business is evolving as the patient movement matures. For years our movement was, frankly, a question: “Should medicine listen to patients? Why?” I’ve spoken at hundreds of events, and happily, it’s no longer a question: we won. Now my speeches are increasingly about the academic and commercial aspects of patient engagement, not the “why.”
A sure sign of progress is that now the patient movement is progressing into business, which has opened the door for advisory work. My newest client is Massive Bio, a very different kind of entrant in the so-called “second opinion market,” where patients in trouble seek other options. It’s a popular idea but doing it successfully is not easy. Here’s the first post I wrote for their site; more will follow.
Medicine falls short if information isn’t brought to the point of need
I know from personal experience what it feels like to be dying of cancer. Nearly ten years ago I discovered, through a routine shoulder x-ray, that I had metastases all through my body, from femur to skull and, we later learned, even in my mouth. I had Stage IV kidney cancer, and man did it get my attention.
My oncologist said, correctly, that he couldn’t give a reliable prognosis because there just wasn’t enough data about patients like me. Some patients don’t want to know – that’s fine with me – but I’m the curious type, so I dug and dug, and the best available data said my median survival was 24 weeks after diagnosis.
That really got my attention.
How did I survive? Happily, I live near Boston, with numerous academic medical centers (AMCs). At Beth Israel Deaconess Medical Center I have a great and famous primary physician, Dr. Danny Sands, as is my oncologist, Dr. David McDermott, part of the Dana Farber Harvard Cancer Center. He’s one of the best in the world on kidney cancer. I got a treatment (high-dose interleukin 2 (“HDIL-2”)) that usually doesn’t work, but it worked on me big-time: I was diagnosed in January and by July my treatment was finished. I haven’t had a drop of anything since.
But many times I’ve thought, what about people without such connections? What are they to do? A major problem in my case would have been that while great medical centers have the most advanced clinical experience, the latest methods are never in the literature, because publishing takes years. So when most oncologists look in the trusted literature, there’s no way they can know the latest.
Indeed, in my case all the scientific literature about HDIL-2 was significantly out of date. The literature on response rate was out of date compared to top AMCs, the literature on side effects (which are sometimes lethal for IL-2) was out of date, and – most important for decision making – the literature on deaths from side effects was out of date.
As someone who’s worked with computers most of my life, I know a little about information theory, and I call this problem “information latency.” Latency is when something exists but hasn’t shown up yet. You know the feeling when you click on a Web link and it just sits there spinning? That’s information latency: it’s coming, but you sure wish it would hurry up.
Now imagine that what’s “spinning,” latent, is the best information in the world about possible treatments to maybe, just maybe, save your life. Or your mom’s. Or your child’s.
This is serious. It’s a real problem. And it’s not just a problem for patients – it affects clinicians too, who want with all their heart to be the agent of a miracle. How can they possibly perform to the top of their potential if the best information isn’t at their fingertips?
I’ve gone on to be a public speaker about healthcare from the patient’s perspective, working to transform what’s possible in medicine, and one of my sayings is “We perform better when we’re informed better.” It applies both to clinicians, and to their patients when they act as partners in bringing every possible resource to a case.
When knowledge exists and doesn’t get to the point of need, it can be a tragic shortfall, just as much as if a fire engine arrives too late. But when innovations help that knowledge flow to the point of need, it’s a great thing.
There are no guarantees in a case like mine: to this day they don’t understand why I responded to IL-2 and others don’t. What we do know is that I got a chance many patients don’t, which is all we can ask: to do everything we can, including bringing the best information to the point of need.
But remember – merely having the information isn’t enough: we need to be able to act on it. Our regulatory system, for all its benefits, can put truly imposing obstacles in the way of attempts to do anything out of the ordinary, even though “the ordinary” may fall far short. And I know well, when there’s major illness in a family, an extraordinary obstacle can destroy opportunity.
All of this is the fundamental problem that Massive Bio is working to address: to help medicine achieve its potential by bringing the best possible information to the point of need – and making it practical to put the plan in action. Only then can the best possible chances be fully pursued, for the benefit of patients and clinicians alike.
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