Translational research for the patient population is translating the research so that is actually means something to us. Using language that is familiar to a lay population. (OK, so that's not in any official definition of translational research, but from a patient point of view, I'm using literally terms, making it my own. All me some leverage here.) Having had the honor of being an Alamo scholar in 2012 and a participant in the AACR scientist <-> survivor program in 2013, I listened closely to the research findings and quickly realized I had to learn a new language, too.
Statistical significance is an accomplishment for researchers. In science, this means that the study achieved its goal. Research was able to prove that A was better than B because "A" was a certain percentage better than "B" at the end of the day.
What does that mean to the rest of us? Unless it's put into real world context, not a whole lot.
Patients who took Fulvestrant 30% less likely to die of ER+ metastatic breast cancer compared w/those who took anastrozole #SABCS14
— Naoto Ueno, MD, PhD (@teamoncology) December 12, 2014
Let's look at this tweet reporting finding from the 2014 San Antonio Breast Cancer Symposium as an example.For starters, to see 30% less likely to die, as a patient, I'm all over that. And, for what it's worth, this particular study should force a change in first line treatment of metastatic disease. Bottom line, until metastatic patients "fail" on arimidex, they are not switched to faslodex. From that point of view, why should we wait to have the drug fail us before we are offered a better option. That's something that must be addressed with the insurance companies that pay for this stuff. Lives matter.
For the purpose of this discussion, however, I'm trying to make a different point. Just want to be clear that this should be a game changer in clinical practice. Basically, a no brainer. But what exactly does that 30% mean?
Six months. To be precise, 5.7 months. When you are staring down a fatal diagnosis, to be given six additional months is a big deal. However, when I read 30% "less likely to die," from a patient point of view, this is what I see:
"Seven people will die, three won't. Maybe I'll be one of the lucky three."
And therein lies the rub. That's inaccurate. The study is clear. Death is imminent. The amount of time has been increased by 30%. Out of context, even if I understood that concept, that it was time to death, we are still missing crucial information. What is the base from which we are working? Without that information, 30% is no different from hearing blahblahblah. If we are, for example, starting at ten years, we've just gained three more years. Quite a difference from 5.7 months.
Then, there are treatments for prevention of recurrence and this is where shared decision making becomes so important. Using that same 30% as a measure of reducing risk of recurrence, the real information lies in this. How many women must be treated to derive the benefit? If, for example, 100 women would need to be treated to prevent 2 recurrences, THAT is the information that should be discussed between doctor and patient. That is the only true way for us, as patients, to weigh the risk associated with any treatment against the potential benefit. Some of us are risk takers, some of us are not. Some of us who are risk averse but can't bear the side effects need to know that a decision to stop a particular treatment in favor of quality of life are not writing ourselves a prescription for disaster.
Without information, in context, presented in ways that the rest of us can understand, there can be no true shared-decision making that is determined using the evidence. It's all relative, yes. But some of us don't understand the theory of relativity. Speak to us in ways we can understand.
The era of patient centered care, of precision medicine, has made this a bit challenging. Sometimes there are many different qualifiers (age, hormone status, genetic biomarkers). While there is no cookie cutter answer that works for all, each of us deserves all of the available information so we can play a role in guiding our treatment.
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