Tuesday, September 4, 2007

Information is Power

In Tara Parker-Pope’s Health Journal column, “Lessons Learned From Doctors, Patients, and My Mother,” in last Tuesday’s Wall Street Journal she talks about her mother’s experience with esophageal cancer. In this excellent piece, she writes, “Taking charge didn’t save my mother’s life, but it made the end of her life better, and gave all of us confidence in her care and the choices she made.” She goes on to write, “She believed, just as I do, in the power of information to save a life, even if it wasn’t her own.” We couldn’t agree more.

On the day her mother received her diagnosis, an estimated 1.3 million other Americans were diagnosed with cancer. Some are highly treatable. However, for others treatment eludes us. The road to treatment is paved by clinical trials. At FasterCures we focus on how we can educate more people about the central role clinical trials play in scientific advances. Clinical trials fuel the drug discovery process and ultimately lead to better treatments and cures. Nevertheless, the process remains a mystery to most. As a nation, we need to put more emphasis on helping the public understand the process of clinical research and innovation – experiment, evaluate, redesign, and experiment.

When patients enroll in trials, survey data shows that clinical trial participants feel overwhelmingly positive about their experience, believe they are treated with dignity and respect, and receive good to excellent care. And yet we know that fewer than 5 percent of adult cancer patients enroll in trials each year.

Clinical trials won’t be the right fit for everyone. My father found his way into a clinical trial after his leukemia diagnosis two years ago, and Ms. Parker-Pope’s quote about how the information didn’t save her mother’s life but it made the end of her life better resonated with my dad’s experience. His clinical trial participation gave meaning to his diagnosis. His access to a top-notch cancer center and experts in the field gave him hope that there was an infrastructure churning towards treatments. He was highly motivated at the prospect of participating in a clinical trial that might help him, but more importantly would help provide valuable information to finding treatments for others.

Information is power and can be empowering. My family will soon remember the two-year anniversary of my dad’s death, and we will honor his contribution to leukemia research. At FasterCures, we are working to ensure that others are offered the information about clinical trials, for everyone’s benefit. Thanks Dad.

Margaret Anderson, COO, FasterCures


Art Mellor said...

At the risk of seeming pedantic, I'll keep beating my drum to the beat of "not all information is equally important."

I feel a need to speak up when I see blanket statements such as "Information is Power." If this were the case, the library of Congress would be the most powerful force in the world.

The fact is, that the right information, at the right time, *applied* in the right way is power. You allude to this with your power/empowerment language change in the last sentence, and I'm fairly certain you understand this.

But when we shorten these thoughts to simple phrases like "information is power" we support the broken notions that fuel the broken funding at places like the NIH. If we believe that any information is power and that it is all equally powerful, even when it only exists as a paper in a magical peer-reviewed journal, we fool ourselves into thinking that we are doing the right thing even when the results do not back this up.

Similarly, especially in high-tech (where I originated), the push for more "innovation" is the dogma. Forget that innovation is ubiquitous and costless; we just don't like to acknowledge that implementation/execution is where the real value lies. That's hard and not fun.

So I urge once again, that we stop pushing this notion that information has value unto itself. It is only the action taken based on that information at the appropriate times that has value. Something that can be measured so we know if it is working (ask, how would you measure the "power" in information? to get sense of how meaningless that statement is).

Unless you do something that has beneficial outcomes, your "power" is not worth anything.

Greg Simon, President, and Margaret Anderson, COO said...

I agree that not all information is equally important. My dad received many beneficial outcomes from his clinical trial participation, some that affected his own health, and some that affected the body of research. He analyzed his options and chose to go with the research team and the trial itself because it was right for him and because he believed the research could lead to a therapy. My point is that patients often don’t know clinical trials are an option. Data becomes information only when the data is put into context. Information becomes knowledge only when it is useful. And knowledge, properly applied, can become wisdom.

When doctors share information about clinical trials with patients, they share the power to make it useful as well. When doctors do not share the information, it prevents others from taking action. In that sense information is power and the use of that power determines if anyone else will have the opportunity to do something useful. I’d rather have information and make my own choices about what to do with it, then hope that a physician will parse out the information to me, or hope that I’ll find it buried on the Internet somewhere.