This is a republication of an article I originally wrote for the HealthCareBlog.
Every so often, my cynical self emerges from the dead. Maybe it’s a byproduct of social media, or from following Saurabh Jha, who pontificates about everything from Indian elections to the Brexit fiasco. Regardless, there are times when my attempts at refraining from being opinionated are successful, but there are rare occasions when they are not. Have I earned the right to opine freely about moving on from financial toxicity, anti-vaxers, who has ‘skin in the game’ when it comes to the health care system, the patient & their data, and if we should call patients “consumers”? You’ll have to decide.
I endorse academic publications; they can be stimulating and may delve into more research and are essential if you crave academic recognition. I also enjoy listening to live debates and podcasts, as well as reading, social media rants, but some of the debates and publications are annoying me. I have tried to address some of them in my own podcast series “Outspoken Oncology” as a remedy, but my remedy was no cure. Instead, I find myself typing away these words as a last therapeutic intervention.
Here are my random thoughts on the topics that have been rehashed & restated all over social media outlets (think: Twitter feeds, LinkedIn posts, Pubmed articles, the list goes on), that you will simply find no way out. Disclaimer, these are NOT organized by level of importance but simply based on what struck me over the past week as grossly overstated issues in health care. Forgive my blunt honesty.
● Can we have fewer posts and papers that describe how immoral financialtoxicity is? We all know it’s a problem and our patients suffer the most from it. But continuing to mention the gravity of financial toxicity? Well, that’s just so 1999. At this point, I want more posts and papers discussing strategies on how we move forward. For example: How can we overcome financial toxicity? Even if our patients appreciate us continuing to discuss the same problems repeatedly, they deserve better answers from us.? Let me illustrate. Say I am your patient and I complain to you about persistent nausea. You, as the doctor are empathic and actively listen to my concern, yet my nausea persists. I appreciate the attention and the listening you offer, but at some point I need something to control my nausea. If you don’t have the remedy, I am more annoyed because you keep restating my problem, agonizing me further and still not offering me a solution or showing any attempts to try to find a solution for my issue.
● I am growing tired of the debate on “vaccines”. Isn’t it clear that by now, if there are people who do not believe in vaccines, there is not much we can do to sway them differently? There comes a time when one must decide where to concentrate his/her energy. I am all for having an open dialogue. But, a dialogue with the intent of changing one’s opinion requires both parties to be open to each other’s views and that one of them might potentially change course. Based on what I have seen over the past few months, those opposed to vaccines will not be persuaded by strong evidence or the amount of data they are given. So, maybe we should direct our attention to something that brings better results? Say, describing financial toxicity one more time? OK, that was not nice.
● There are many stakeholders in the health care industry, but the ultimate stakeholder is the patient. Aren’t we all previous patients, current patients, or future patients? I am growing tired of folks pointing fingers at each other as the solely responsible party for the current state of affairs. Academics blame pharma, pharma blames research costs, insurers blame both, patients blame insurers, physicians blame the system, and the list goes on & on. We need to be fair and practical if we are to approach our health care system in a methodical way that lends towards some solutions. The reality is, EVERY entity is important in assuring proper delivery of life-saving drugs to patients who stand to benefit. We all can name hundreds of therapies that were developed outside the walls of academic and university labs, and similarly name many medication that required collaborations between academia and pharma to achieve success. Pharma defends itself from being the culprit, challenging us to envision how our current drug development and research ability is without the manufacturer’s taking risks? Would we have the “Gleevecs” of the world? Likely not. Could these drugs be much cheaper and could we have a more rational approach to drug pricing? Absolutely. But, hospital prices also need a better rationale for the costs of blood draws to x-rays, and the absurd costs of a Tylenol pill in an inpatient ward. Why do academicians rarely critique hospitals? Because they are employed by such hospitals. In general, it isn’t advisable to critique the employer that issues your paycheck. I plea that the critique must be fair, balanced, and equally distributed among all stakeholders.
● Since we all know that a few patients are treated on clinical trials, we need to figure out a way to incorporate data generated from non-trial patients into decision-making. That’s what I call the “real world” Yes, it’s not perfect, but such is life. Less critique to the idea of studying the real-world and more thoughts of how we should analyze such imperfect data would be welcome. If I bet a dollar for every time I see a post contending “we all live in the real world; my world is real; there is no such unreal world”, I would be as rich as Jeff Bezos, before his divorce debacle. Bottom line, we live in the real world, so let’s embrace its imperfections and figure out how we proceed. We can’t answer every question with a randomized controlled trial; that’s just not doable. We can, however, learn from ‘patient Bob’ that encountered a toxicity not mentioned in a clinical trial; knowing that such toxicity can be seen in the real-world might help manage subsequent patients like ‘Bob’. For example, if we were to apply the aforementioned case to the real-world, when the initial study on Ibrutinib in CLL was published in NEJM, it did not report atrial fibrillation as a potential toxicity. However, now no CLL treater or a hematologist would dispute atrial fibrillation as a potential adverse event. I credit real-world data with this piece of information. Let’s utilize ALL of our resources symphonically to optimize patient care. That should be our guiding principle.
● I see many complain when patients are labeled as “consumers” and when doctors are called “providers”. The sense is that these definitions demean both. I can understand this viewpoint, but is this really a problem that is worth spending time on debating? Have we really resolved all health care issues such that we are now simply arguing whether we call ourselves providers or physicians? Wouldn’t that be luxurious? If labeling patients as “customers” or “consumers” of the health care system will force the system to accommodate patient’s needs, I am all for it. Why not? Whatever it takes to decrease wait times, improve satisfaction, and allow patients to enjoy the experience despite having an illness. If we view patients as “consumers” of what we have to offer, and recognize that consumers in any market have choices, maybe we would be incentivized to improve the subtle comforts in our health care delivery model. If the end goal is to maximize the patient experience, then let’s not get hooked on how we label this and that. As doctors, we “provide” healthcare service, expertise, help, listening ear, etc etc. Like it or not, we are “providers of health care”. Let’s refocus the debate on what best serves our patients and take a critical look at more pressing topics than nomenclature.
I am sure that every reader has his/her own laundry list like mine and the list changes based on whether the Patriots won, or if your coffee was made with cream or diluted almond milk. I shared some of my nuanced thoughts with you because I believe we have bigger problems to solve. We need action plans to help serve patients better, move the needle from talking about financial toxicity to solving it for the sick and vulnerable, and (yes, I mean everyone here) needs to collaborate and try to align our interest in recognizing that patients are the ultimate end user of the health care system. Thanks for indulging me as it was quite cathartic, and I might lobby to have a new laundry list of complaints every month (until I get blocked by the editor)!