Continuing the Dialogue With Patients in Mind: Two Oncologists Reflect On #ASCO19

Continuing the Dialogue With Patients in Mind: Two Oncologists Reflect On #ASCO19

Guest Commentary

Jun 19, 2019

By Mark A. Lewis, MD, and Chadi Nabhan, MD, MBA, FACP

Monologues are falling out of fashion. Dialogues are defining fashion.

Soliloquy may have been all the rage in Shakespeare’s day, with Hamlet delivering the most famous speech in all of theater while completely alone. But Macbeth, in his own solo performance, also warned us of “the poor player who struts and frets his hour upon the stage… full of sound and fury, signifying nothing.”

It is difficult to affect change within a vacuum, hard to gauge if your words are exerting an impact or disappearing noiselessly into the void. Just as an audience gives real-time response to a speaker and can influence the tone and content of their remarks, having a partner in conversation is meaningful. The provision of feedback can challenge your own preconceived notions and inoculate against self-centeredness. Going back and forth doesn’t necessarily root us to one spot but in fact propels us collectively forward. And working together was a major theme at the 2019 ASCO Annual Meeting.

Every June for the last 10 years, the beautiful city of Chicago has hosted the biggest oncology conference globally; this year, ASCO broke all previous records with 42,000 in attendance. Those present in the gargantuan McCormick Place convention center spanned all key demographics interested in oncology: physicians, nurses, drug manufacturers, researchers, policymakers, health care journalists, and—most importantly—patients and advocates. With all these stakeholders mingling, the dialogue was robust. The crosstalk was anything but mundane. And all these conversations were facilitated and magnified by social media, specifically Twitter and the hashtag #ASCO19.

Mirroring the movement in medicine away from paternalism toward shared decision-making, the talk around the ASCO Annual Meeting has become less unidirectional and more participatory. While oral presentations still largely spotlight individual speakers and amplify their lone voices with microphones, their comments are immediately broadcast and discussed online in the increasingly rich exchanges of information and opinion that occur on social media around these conferences. Rarely does a speaker show a slide without hundreds of hands raising smartphones to take pictures for immediate capture and transmission, sometimes igniting significant and instructive debate!

Twitter has become the dominant platform for open conversation about most medical matters, and we believe this year will be seen as an inflection point in the network’s usage by oncologists. Leading by example, Dr. Yousuf Zafar, the discussant of the first plenary presentation on ASCO’s largest stage, gave a masterclass not just in contextualizing a study’s historical importance but in simulcasting his remarks on Twitter, having cannily scheduled his Tweets in advance such that they appeared in unison with his onstage commentary. In stark contrast, when one of the authors [CN] attended his first ASCO meeting in 1999, there was no Twitter, there were no smartphones, the price of a tall Starbucks coffee was $1.25, and disseminating information in real time was viewed as a fantasy. The science fiction of the last millennium is the reality we inhabit in the 21st century. What a time to be alive!

Following the #ASCO19 hashtag allowed many to observe and engage from a distance without the need to travel or incur the considerable expense of conference attendance. In fact, almost every scientific meeting these days has a similar hashtag that patients can follow and respond to. Having the ultimate stakeholders and “end users” of oncology contribute to these conversations makes them so much richer and grounds participants in the true meaning of their work. In fact, Dr. Monica M. Bertagnolli, ASCO’s immediate past president, themed the 2019 meeting “Caring For Every Patient, Learning From Every Patient” and gave an impassioned opening address reminding everyone there that, for all the necessarily dispassionate science under review, patients remained their raison d’être.

There remain other tangible aspects to the meeting IRL (in real life) whose meaning cannot entirely be translated to Twitter, as Dr. H. Jack West eloquently explained in his Medscape article, “ASCO: Ain't Nothing Like the Real Thing, Baby.” Certainly the #ASCO19 hashtag enabled  oncologists around the world to collate the newest findings being presented by their colleagues on the ground in Chicago. But we may never have technology that can wholly and satisfactorily replicate the value of in-person networking and the esprit de corps that permeated McCormick Place. Connections that began virtually through Twitter conversations, debates, and even rants can culminate in the most pleasing IRL meetings. In fact, the writers of this article, previously only known to one another via Tweets, met IRL for the first time during #ASCO19, resulting in this very essay. The ability to meet face-to-face and collaborate with other researchers nationally and internationally has been made easier through virtual introductions and the digital curation of kindred spirits. Oncologists who have not yet adopted this technology are truly missing out on identifying like-minded colleagues and potential co-investigators.

But, as Dr. Bertagnolli acknowledged, oncologists accomplish nothing without the people we treat, whose care we are collectively aiming to better. We believe what mattered the most about #ASCO19 is that patients were part of the discussion, voicing their perspective on the presentations and how they might be affected by the emerging research while also suggesting areas needing further study. As with the structure of the federal government, the patients provide vital checks and balances on our executive power.

Words matter, and Twitter can be seen as the second coming of Gutenberg’s printing press in how it has democratized our ability to publish and disseminate our thoughts at a keystroke. Advocates rightly critiqued an abstract that described patients “who had failed” whole brain radiation therapy. As it turns out, the real failure in question was a linguistic reversal of blame, and we were appropriately goaded to provide more successful treatments in the future. Elsewhere at the meeting and via #ASCO19 advocates were also vocal about the two trial endpoints that truly matter to them: overall survival and quality of life. Researchers were chided—again, rightly so—for accepting or even promoting surrogate markers that did not translate to improvements that patients could perceive as beneficial to them. Particularly engaged on these issues and other patient advocacy topics during #ASCO19 were Julia Maues, Diane Mapes of Double Whammy, the IBC Research Foundation, Rod Ritchie, and Elaine Schattner.

In conclusion, there are countless scientific meetings every year and conference-adjacent hashtags will come and go on the tide of digital ephemera. But, rather than being overwhelmed or feeling excluded, patients should be assured that they can follow along, participate in the conversation, object conscientiously when researchers lose sight of what truly matters, and shape the direction of research through their invaluable input.

While we both were skeptical about Twitter when the platform started, we have become addicts—err, big fans—and believe, if its power is harnessed properly, patients will be better served, which is the shared goal of all oncology professionals.

So long and best of health until #ASCO20…

Dr. Lewis is the director of gastrointestinal oncology at Intermountain Healthcare. His professional interests include neuroendocrine tumors, young-onset cancers and hereditary cancer syndromes, shared decision-making, and patient-physician communication. Follow him on Twitter @marklewismd.

Dr. Nabhan is the executive vice president and chief medical officer at Aptitude Health, a global health care entity. He is a hematologist and medical oncologist with interests in lymphoid malignancies, genitourinary cancers, value-based care, and the business and economic aspects of oncology care delivery in an era of rapidly changing reimbursement models. Follow him on Twitter @chadinabhan and listen to his podcast, “Outspoken Oncology,” on iTunes and other podcast outlets.

 

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