AACR Scientist Survivor Program: My Second Time Participating as an Advocate
I was honored to be selected to participate in the American Association for Cancer Research (AACR) Scientist Survivor Program (SSP) that took place April 9 – 13 in New Orleans. It was the second time I was part of the SSP at AACR's annual meeting, which is attended by researchers and cancer medical professionals worldwide.
A program for patient advocates
The SSP program provides an opportunity for patient advocates to learn about cancer research through education and structure, which is helpful for those who don't have a science background. The opening session includes a 'Mini-Med School,' which covers the basics of cancer research and sets the stage for all the science that will be learned throughout the conference.
Advocates are assigned to a working group consisting of advocates from different cancers, an advocate mentor, and a scientific advocate. Each group must gather information from sessions they attend to answer a challenging question about cancer that is given to them before the meeting. My group's challenge question was about cancer as a complex adaptive system (CAS) in the context of its environment – we had the most complex and challenging question!
Cancer research needs to include the whole system
Our group was fortunate to have two fantastic scientist mentors. Both Jerry Lee and Shannon Mumenthaler helped us understand cancer as a CAS and why it's crucial to study the whole system in cancer research. I don't fully understand biological systems and how cells and networks store and manage dysregulated information, but I do understand that behaviors and interactions between the system parts are constantly changing and adapting to their microenvironment. So, it is essential to study cancer in the context of its microenvironment and understand how it changes the whole body because whatever happens in that environment impacts cancer and vice versa.
It makes sense -- the whole is greater than the sum of its parts, but most research studies the parts. Research experts in different disciplines (math, physics, biology, chemistry, etc.) need to collaborate to study the whole system. However, it doesn’t make sense that efforts are getting lost in the science and research at the molecular level, losing sight of the most important part of the system – the patients! How do patients evolve in the context of their environment?
The value of real-world data
While writing my presentation for ASCO, I thought about this a lot and why Real-World Data (RWD) is essential and should complement data from clinical trials. Clinical trial data is necessary and should never be replaced, but it only tells a statistical story about the science in a controlled environment. The story can be told in many ways when that data is sorted, analyzed, and presented.
The story needs context to capture what's relevant and meaningful about that data. RWD is the context. In addition to genetic variation, patients have unique differences in age, race, ethnicity, gender, preferences, values, family life, work, etc.! Navigating a cancer diagnosis is just part of a patient’s complicated life. And just like cancer, whatever happens around us in our environment, impacts many different aspects of our life and our cancer experience.
Evidenced-based data from trials can tell you if a drug works and is safe, but it can’t provide an understanding of nuances needed to know for whom it will work and be safe. Patients are the experts in the lived experience and are the only reliable data source on what that complex system is doing. Researchers need to understand the totality of factors that influence the patient experience, which is a part of the complex adaptive system.
In the era of precision medicine, the multi-omics approach, which is combined genomics, transcriptomics, proteomics, and other technologies that provide a faster and more complete picture of cancer and drug response, is promising, but as the science around cancer gets more complicated and complex, PERSON-omics is a critical part of the whole complex adaptive system. Patients are more than the sum of their parts.
Patients and researchers coming together
Once again, the SSP has significantly impacted my advocacy by challenging me to learn, ask questions, and think more critically. I hope that we patient-advocates have helped researchers see that patients are each unique and understanding their whole story can help further research and treat patients and their cancer optimally.
I encourage any cancer research advocate who wants to connect with other advocates and work with scientists to apply for the SSP program. For anyone interested, please visit the AACR website.
Do you considered yourself to be a well-informed lung cancer patient?