Why expertise is important in guiding treatment planning, myeloma research, and much more
A new book, “The Death of Expertise: The Campaign Against Established Knowledge and Why it Matters,” highlights the disconcerting rise in anti-expertise sentiment in the U.S. In the era of Wikipedia and Google, everyone can be his or her own “expert.” The bounty of information available is a positive development. But the notion that experts can be wrong and therefore cannot be trusted is a dangerous one.
This undercurrent is starting to have an impact, and so here are a few things for patients to keep in mind in this strange new anti-intellectual environment.
Let’s start with a simple example. An abstract presented at ASH (American Society of Hematology) indicates that a handful of myeloma patients have shown some benefit with a new drug in early (phase I/ II) trial testing. How important is that finding? A Google search might reveal that 3 out of 15 patients had a partial response (PR). This might be enough for a patient to ask to receive this new drug, but her local treating doctor has no experience or “expertise” with this drug. What to do?
Well, obviously, contact an “expert” for advice: preferably the principal investigator for the trial or one of the co-investigators. Most such individuals are very open to being contacted. You find out that some serious infections, plus kidney issues, had occurred (not reported in the abstract) and patients were really not “refractory” and actually had rather limited prior therapy.
So, it turns out that this trial may not actually be a very good choice. But another expert calls back and says that the results are very exciting and could produce a fantastic response. Now what to do?
This is when a wise local doctor becomes the team leader to provide sensible guidance. No need to try something experimental when many new very active myeloma drugs have been approved and are available. Local doctors usually have experts that they rely upon and trust. Solutions emerge rather quickly and you can proceed to next steps.
In the research area, interpretations and recommendations can be much more contentious. The IMF’s Black Swan Research Initiative approach, which I discussed in a recent blog, offers a helpful model. Do all the research results point in the same direction? Are all the swans white? Or is there a black swan in the mix?
An interesting science example in the news this past week focused on the search for other civilizations (intelligent life) in other parts of the universe, specifically the Cygnus (Swan) constellation. Unusual light fluctuations were discovered by a citizen scientist as part of the “Planet Hunters Project.” The light fluctuations were observed around star KIC 8462852, also known as the WTF (“Where’s the Flux”) star. Jill Tarter, the Chairperson of the SETI Institute (and inspiration for the Jodie Foster character in the movie “Contact”) comments that the WTF star is interesting and obviously deserves further study to see if a new planet has been discovered.
But Jason Wright, Associate Professor of Astronomy at Penn State, created a controversy when he postulated that the cause for this “weird flux” may be an artificial megastructure (something called a” Dyson Swarm”) created by an alien civilization. The media caught wind of this and before you know it, the headlines were telling us “alien life has been discovered.”
Value of experts and skepticism
This is when the wise counselor steps in, in this case Tarter. It could be a new planet, says the SETI chair, or perhaps it was swallowed up by the star causing the flux, or maybe we just need to be patient for now. But Tarter also notes the almost insatiable desire in the media and within the community generally to find a “Goldilocks planet”—one that is "just right" to support human life. She ends by saying, “Please be patient.”
In research we need not only patients but experts and keen skepticism. A1998 book called “Probability 1: Why There Must Be Intelligent Life in the Universe” by Amir Aczel applies what I call “the Black Swan method.” In this case, the question is: If we have black swans (human life) on earth, how likely is it that black swans have emerged elsewhere in the universe? The answer is not just “highly likely,” but black and white: there must be other life somewhere in this vast universe.
The heartwarming aspect to this story is that other humans who have emerged elsewhere most likely have had vastly longer than we've had (billions of years) to figure out how to cure and prevent cancer. So, with that in mind, I am going to be awaiting that incoming email with the answers!
New Black Swan illustration
While we are all waiting for older forms of intelligent life to give us the secret to curing cancer, the IMF’s Black Swan project continues here on Earth, involving the best minds to come up with answers that will lead to myeloma cure and prevention. Based upon helpful feedback, we’ve updated our Black Swan illustration. Hopefully it makes clear that we will be looking wherever the answers may be: Iceland, Spain, China, or perhaps even the Cygnus constellation.
Dr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.