Different Times, Changing Priorities
The first principle is that you must not fool yourself and you are the easiest person to fool.
Richard Feynman
I’ve been working under a false assumption for years about myeloma patient education. That more is better; that an educated patient will have a better quality of life and live longer than one who isn’t.
It’s been gospel ever since I attended my first IMF Patient & Family Seminar in Atlanta in 1998. When I saw Morie Gertz from the Mayo Clinic give his Weeds in the Garden talk and how deeply it informed and motivated the audience, I was hooked. (It was the first of at least fifteen variations I have seen or listened to over the years, and remains, in my opinion, the single best patient lecture, whether newly diagnosed or with decades of survival.)
Now I understood why meetings like this were important, unlike Robert Kyle when Susie Novis first approached him with the idea of having experts like him speak to patients. “I didn’t think anyone would be interested,” remembered Kyle years later, “I was wrong.” We both became disciples, internalizing Susie’s oft-used phrase, “Knowledge is Power.”
In recent years, however, I’ve started to question this. Even as I created and implemented a patient education program that most attendees thought were great, questions nagged me. What exactly does “knowledge” mean? What is realistic about what patients should know?
Perhaps it seemed gradual, being a part of it. Somehow, I never saw it. In my last article, I concluded with a comment from Marie von Lilienfeld about the need to “slow down” when it comes to how we think about diversity and disparities. I think we should do the same with patient education.
The world that led to the creation of patient education is not the world we are living in. Yet we use the same methods and motivations. But the goals have and continue to change. Maybe patient education needs to be rethought as well. Why?
Because the fact is that all the patient education activities of every patient advocacy organization combined reach a very small minority of the patient population. The vast, overwhelming majority of patients never have contact with an organization or support group. The extent of whatever education they get about their disease is from medical office visits.
Are they living poorer quality of lives and dying sooner because they don’t engage with patient advocacy or education?
You’ve been diagnosed with myeloma. If you’re statistically average, you’re approaching seventy. That means, if you’re even more average, you haven’t cracked a science text in at least six decades. Maybe some articles or a book here and there over the years. Even for those who are diagnosed at younger ages have issues as well. “I realized,” Primo Levi once wrote, “how cruelly different it is to learn at age twenty, age forty, and age sixty.”
Not even a lifetime devoted to some aspect of science does much to increase your odds of knowing something about myeloma. Like virtually every patient, your knowledge is probably closer to “none whatsoever.” That applies to medical doctors and oncologists as well. I’ve lost count of the number of physicians and nurses I’ve met or known who were just as mystified about myeloma as anyone.
If Google searches are to be believed, the Mayo Clinic myeloma information page is the place most go to get basic information. At some point in the coming year, about ten-to-fifteen percent of them – maybe as high as twenty if we want to be generous – will come into contact with a patient advocacy organization. It may start repeated contact, it may only be a fleeting click. Actual numbers are fuzzy, self-generated ones, I know from experience, should be taken with a few grains of salt.
Based on my experience, if one were to take all four patient advocacy organizations with myeloma as the principle or a primary focus, if one could add up every mailing list of every patient support group in the nation, add up every attendee of a live or virtual event or fundraiser, and assumed no overlap, that each were a unique user, it would add up to five-to-ten percent of the myeloma community. How do I come to this conclusion?
Because, even seen from the most optimistic viewpoint about patient education, the vast majority of patients do not do much outside of their regular office visits. Few will be motivated much beyond that. After all, they have lives to live. They didn’t anticipate myeloma would be a (big) part of it. And won’t.
Patient education was quite different twenty-five years ago. In terms of treatments, there really wasn’t much information to retain: bisphosphonates for bones, melphalan-prednisone, more information was coming out about bone marrow transplants, but it was still scary stuff. Perhaps some clinical trials would come up. Oh, and there are rumors about something was going on in Arkansas. Since it was in a strange language with jargon, it seemed more difficult than it was. A lot of the talks featured items including it was alright to have a little chocolate, an occasional glass of red wine, and don’t let life pass you by. Equal parts information and motivation.
Fast forward to around 2015: the flurry of information coming out about myeloma-related research and drug approvals was reaching hurricane force as compared to just fifteen years earlier. The patient education disciple in me was convinced that patients were living longer and wanted “graduate” level patient education. Events and resources needed to be tailored to them. After three events, I quickly learned I was dead wrong.
Newbies were attending the events I put together! And more than a few. I realized they didn’t have the slightest clue about the topics being discussed. Most were there because they just wanted to meet and see other patients. They didn’t feel isolated and alone because of myeloma.
One of the messages they keep hearing it is good to be up to date on the latest information. In fact, they’re told, it’s essential! It will matter to one’s health in a positive way, so the reasoning goes. Still, there’s so much information to grasp, and it’s coming fast. Moreover, an expanding basic vocabulary makes it more difficult to understand.
An absurdity began to be revealed to me. Why should patients have to know all this? The details? After all, to compare, when you bring your car to a shop for repairs or maintenance, you don’t have to learn about how engines work or the theoretical physics and reactions of combustion. Or know much of anything, for that matter. The pros will take care of it, you’ll pay, and drive off into the sunset.
Or basic healthcare either. If you get a headache, you just take aspirin or something like that. You don’t need to go to a seminar about why you need to take them. Or what about getting a cut? You know you have to wash and put a bandage on it. Do you have to learn about the innate immune system or what neutrophils and platelets are or what they have to do with inflammation?
Why should education about myeloma, or any cancer, be any different? Because the reality existing today bears no resemblance to the disease three decades ago. One that no longer resembles today.
Back then it was thought patients needed to know because they might know more about myeloma than their treating physicians. Once myeloma was diagnosed, most oncologists, who then had little-to-no experience with the disease, looked into old medical school textbooks, and those didn’t provide much if any information at all. As ancient as the stories of Daniel Bergsagel or Raymond Alexanian might seem us, to physicians in the 80s and 90s, they were cutting edge. And what they read about myeloma was not good, medically speaking.
Patients commonly told stories about educating their own physicians about myeloma well into the early 2000s. Michael Katz, as we have seen, certainly could. Myeloma centers of excellence could be counted using all the fingers on two hands, maybe having one or two left over. I recall a call with the mother of a young patient in his mid-30s and learning he lived in Denver. As my mind raced for specialists in 2003 to recommend, I could only think of one center in the entire Mountain time zone, in Arizona.
Fast forward to today. The picture of myeloma treatment does not remotely resemble that era. Not that everything is perfect, but the evidence is clear: it’s quite different. In just the Mountain time zone, that patient could get very good care by staying in Denver. Specialists are in Utah, New Mexico, and in multiple parts of southern Arizona. Each clinic has outreach to surrounding states and regions to extend reach and ease access for patients traditionally underserved.
In the late 1990s, the International Myeloma Workshop (IMW) was a biannual event attracting hundreds of experts from throughout the world, something that had been unprecedented compared to a decade earlier.
Today, the IMW has become the annual International Myeloma Society (IMS) meeting with thousands of attendees. At the next annual meeting of the American Society of Hematology (ASH), the big myeloma update session is expected to top the 16,000 attendees who attended in the last meeting prior to the pandemic.
Some veterans wonder if it might not be an unrealistic estimate that an average of fifty physicians either specialized or well-versed in myeloma are being added worldwide per week. Compare this to the first IMW in the mid-1980s, when just more than fifty attended.
Here’s where we are today: the average youngish, early thirties medical school grad who has completed a fellowship in hematology-oncology with a myeloma specialty is not a rube or inexperienced. They have treated patients for a couple of years under supervision of expert mentors. They will know more about myeloma when they start working in a clinic than the most experienced patient who has or will ever live. And there are more of them than ever and the field is growing. Michael Katz would proudly, willingly, defer to them.
The idea of patients educating their treating physicians is archaic and out-of-date. It rarely applies anymore. Only in rare, ever-dwindling cases.
Does this mean patient education is passé? We should leave it to the experts and get out of the way? Absolutely not. But does an overemphasis on patient education skew priorities? Would an hour taken to learn about the latest study be better spent exercising, being with family, or just plain doing nothing for a change? Can the quest to improve quality of life actually diminish it if it gets out of hand?
The answers, I think, are yes and no. Yes, it’s important to understand some basic concepts so that you and your caregiver can have constructive physician visits. It will help to interpret and speculate constructively. But to be honest, I’d rather have my physician know about the latest study than me. And they do. These young doctors will know more about the implications of studies than a patient ever will.
It’s the task of patients to be prepared for that conversation or, at the very least, ask the right questions until answers and implications are understood. That, to me, is the purpose of patient education.
Furthermore, I worry when I see patients writing about complex scientific topics. Have they been infused with some wisdom by virtue of being diagnosed? Yes, they have special insights as patients. But is that enough to translate complex scientific information with other patients?
“What about Michael Katz?” I hear you screaming. “Wasn’t that part of your point in writing about the meaning of his advocacy? Again, yes and no. Yes, he was unique. But he was also of his time as much as he was ahead of it. Back then he was a visionary about the possibilities of the internet. Today, he would be one of many, having to “compete” for recognition – not that he wouldn’t have achieved it, making it more unlikely to have the impact he did.
“But didn’t he have a central role in shaping advocacy and education today? What about the filming he did at ASH?” Again, yes and no. Yes, he shaped it, but it was largely a world of committed volunteers. Their success drove advocacy organizations to create professional roles and pharma sponsors were ready to sponsor them. They had shown great success in volunteer roles, imagine how much more effective they would be with paid staff!
As for his filming, Katz really had two purposes, the obvious one being less important. Yes, it was great to see actual researchers at ASH describing their research. But it was more important for the unspoken message contained in each video: despite what you may hear, there is a lot of interesting research going on and you might benefit from it. That’s a far cry from becoming breathlessly optimistic about a study that ends with something akin to, “and this is a promising fact worth of more study” or a phase one study that still has years to go to even have a chance in the clinic.
I believe we must recognize and confront them honestly. Remember the scenario with which I began my Substack articles: at least 35,000 American families will become intimately familiar with myeloma in the coming year, becoming part of a community that is up to more than 200,000 today.
Prior to the pandemic, 20,000 more Americans with myeloma were living with each passing year. During the pandemic, that expected number was cut in half, but it is now slowly moving back to pre-pandemic expectations.
There are literally thousands more physicians and nurses who are well-versed in treating myeloma today as compared to twenty-five years ago. Today, medical school grads are entering the field because they want to be part of curing a once incurable disease. They are not like their 20th century counterparts who, for the most part, didn’t want anything to do with a disease they could do little about.
When I began writing this essay, I had the working title of Mea culpa in mind because I felt a sense of guilt for whatever small role I may have played in shaping – misshaping? – myeloma patient education today. It was pointed out to me, though, that I have nothing to feel guilty about, I’m just learning like everyone else.
I hope the lessons I’ve learned and am sharing will cause reassessments of what patient education actually is and what is appropriate for each individual. Much like Lilienfeld’s vision of diversity medicine, some answers might lie outside of what we think is medicine. Just like myeloma and its variety of treatments, there are no one-size-fits-all solutions. Recognizing this is an important first step to take – confidently, as a community. To do that, we have to slow down a bit without taking a step back.
Ours is a different world than that of decades ago. We shouldn’t be hindered by outdated assumptions that have little to do with our contemporary world. And these will change in future years. In coming weeks, I’ll try to explain this further.
Photo: Detail, Boat Builder (ca. 1904), John George Brown, The Cleveland Museum of Art