Author’s Note: This article was written with the help of AI and edited before submission. I asked ChatGPTv3.5 to summarize each of eight articles in 100 words. I then asked the software to identify five potential themes from the summaries. Next, I prompted it write a 500-word personal reflection on the theme that resonated most strongly with me. The result was the first draft of what follows, a thoughtful commentary that encapsulates my beliefs about the state of patient advocacy. Lastly, I used hemmingwayapp.com to simplify and edit the language of the piece for readability.
Editor’s Note: Given ILCN’s ongoing series examining AI and its potential implications for the practice of thoracic oncology, our editorial group agreed to welcome an article created with the help of AI—something we normally would not do. That said, as with human writers, ChatGPT needs an editor. While the following began with AI-generated copy, it has been edited by humans for accuracy, clarity, grammar, and style.
As the field of thoracic oncology evolves, so too does the lung cancer advocacy landscape. That evolution continued—and perhaps sped up—in 2023. As the year draws to a close, I wanted to take some time to reflect on the patient advocacy issues and perspectives we have explored in ILCN this past year.
I am part of a resilient community of lung cancer patients that has experienced both victories and heartbreaking losses. As a lung cancer survivor since 2018, I have the growth and dynamism of patient research advocacy. This growth, while encouraging, comes with a bittersweet reality—prominent patient research advocates are frequently lost along the journey as discussed in Passing of The Baton—On the Death of Patient Research Advocates. Their absence reminds me how fragile and mortal our community is. It makes me reflect on their impactful work and brings to mind questions of legacy and survivor’s guilt. I wonder if the work will continue. I hope the work will continue.
In particular, I hope to see continued progress in addressing the stigma many patients with lung cancer face. Lung cancer carries a heavy burden of shame because many people link it to smoking and believe patients brought it on themselves. This shame is a widespread problem, and Terri Ann DiJulio’s brave reflections on the topic have resonated with me. As a lung cancer survivor and advocate, she candidly discusses the weight of shame associated with lung cancer, particularly the stigma surrounding its link to smoking. Her advocacy to destigmatize lung cancer and encourage empathy has sparked a crucial narrative shift and calls for a kinder and more inclusive language as lung cancer can affect anyone.
One of the constant companions in my journey as a lung cancer patient is “scanxiety,” and two patient perspectives this past year explored the psychological impact of regular surveillance on patients. The emotional turmoil leading up to and following scans is an exhausting cycle, deeply embedded in our lives. Some have suggested doing fewer scans for stage I lung cancer. However, many people, me included, believe it is important to continue receiving these scans. Read more here and here.
Dr. Anne-Marie Baird’s presentation during the 2023 World Conference on Lung Cancer showed us the challenges faced by individuals, caregivers, and healthcare teams. The disparities in therapeutic options and inadequacy of communication around the world remain a significant barrier in our efforts to cure lung cancer. These challenges show that we can do more to share information and resources to improve the care of all people with lung cancer.
As advocates strive for progress during an increasingly tech-dependent world, an important question must be considered: How will AI affect lung cancer care? As algorithms increasingly play a role in healthcare, it will be more important than ever to address biases in datasets, understand AI decision algorithms, and protect patient autonomy in healthcare choices. The potential benefits are great, but it is important to include AI in healthcare in a careful and thoughtful way. For more on patient-related issues related to AI and healthcare, read Artificial Intelligence in Healthcare: A Patient Perspective.
As a lung cancer survivor and advocate, I see the road ahead as filled with challenges and possibilities. The legacies of patient research advocates lie not only in extending survival rates, but also in fostering a more empathetic, inclusive, and informed approach to lung cancer research.
The ongoing pursuit of progress is a collective marathon, where teamwork remains our strongest ally. Honoring those who have been lost, documenting their knowledge, nurturing the next generation of advocates, and prioritizing patient-centric research are the pillars upon which their legacy is built.
In this quest for progress, patient research advocates carry the stories of the fallen. Their legacies will be measured not just by the progress achieved, but by the empathy, support, and resilience that define the lung cancer community, for all those involved in their care.