Learner Feedback – Understanding Colorectal Cancer
The Colon Cancer Alliance recently collaborated with the online patient community Smart Patients on an empathy-building program called #ColorectalCancer1day. Together we matched patients and caregivers affected by colorectal cancer (“teachers”) with researchers and clinicians from Kaiser Permanente who wanted to learn more about what one day with colorectal cancer feels like (“learners”). We’re now sharing the highlights from this learning experience with a broader audience.
One of the most exciting moments of our #1day exercises is reading the responses from the learners as feedback and insights are delivered to our inboxes. Naturally, we expect some of the most insightful commentary to come from the participants who have an idea of what life with a given disease may be like through professional or advocacy efforts, but haven’t had the opportunity to truly experience a day in the life. The learners for our #ColorectalCancer1day exercise, composed mostly of Kaiser Permanente physicians and researchers, exceeded our expectations.
As cancer clinicians and researchers, we knew our learners understood much about how cancer can affect people. But how did experiencing colorectal cancer through the #1day program change their perspective and how might it affect their work? For Doug, his teacher Petra “provided real insights into the daily out-of-office challenges she faced in several parts of her life, from day-to-day routines like diet to interactions with relationships around her.” Those types of insights were equally valuable for Katie, who “realized that I do not know how much cancer and the aftermath of treatment affect every aspect of their life. Wearing the [ostomy] bag was especially powerful. It was shocking that even the things I take for granted like getting dressed and working out become a challenge with a colostomy. I think this experience will make me a better doctor; more empathic and sensitive to my patients' experience.”
Mateo offered this bit of feedback regarding his #ColorectalCancer1day experience with his teacher, Jennifer. “I asked Jennifer what she would want to know more about and what she would recommend that researchers study to help improve our understanding of the cancer experience. Her thoughts were great, and I will be sure to share them with others so that we can collectively try to make improvements in those areas.”
For Ginger, who is both a researcher and a cancer survivor herself, #ColorectalCancer1day provided insight into her experience as a patient as well as perspective from the researcher’s point of view. “Hearing about Jennifer’s symptoms and how they were impacting her quality of life was also helpful. Even more so thinking about the changing nature of our body’s reaction to treatment and the uncertainty it causes and how all of that needs to be factored into planning for how one is going to integrate family, work, and treatment. Jennifer’s day to day life is complex and so was mine. I didn’t feel that my physicians ever really got this, or at least they never acknowledged or worked with me to address it.”
Beyond the clinical understanding of what colorectal cancer is, #ColorectalCancer1day provided these medical professionals with an opportunity to understand better what colorectal cancer means. Doug felt this experience “opened [his] eyes to questions and concerns colorectal patients may have, and how to engage them (and their partners/families) in the full-life aspects of care and living post-cancer.”
Katie identified the value and importance of sharing, while also recognizing the curated experience that social media has become. “I was posting on social media and felt free to share all my negative thoughts and feelings about the experience. But, I realized that if I had cancer, I probably would not have shared those negative feelings with my whole social group. I would have been more selective and maybe only posted my real thoughts in a safe group – like Smart Patients or a private group. I guess I never really thought about that – how I would have to tailor what I said about the experience if I was going through it myself. That surprised me. What I learned about myself is that I like trying to walk in someone else's shoes. I am a curious person and realized that doing something like this is a growth opportunity for me both professionally and personally.” All of which begs the question, if we spend our time presenting the best version of ourselves, where do we go to share how we truly feel, free of shame or stigma? This is why Smart Patients is looking to expand the opportunity presented by sites like Blue Hope Nation and Colontown, giving people impacted by colorectal cancer a place to share.
Ginger’s takeaways largely stemmed from her experience wearing a simulated ostomy bag to match her teacher’s. “Wearing the ostomy bag was also quite informative. I wore it all day, even while bike commuting and playing with my children after work. At work, I did have a couple of leaks, one while I was talking to my director. It immediately got my director’s attention, and she inquired about it. Her father was a CRC survivor, so we got to talking about that and we talked about how embarrassed I might have been if that was bodily excretions rather than just water.”
“It reminded me a lot of how I feel about my mastectomy, more frequently self-monitoring to assure that I’m passing as normal and don’t upset anyone who doesn’t know what I’ve been through….What you just don’t get by reading about the cancer experience is what it feels like to the person going through all these things….I also hope this will enrich my scholarly writing on the topic because I can draw on my experience and my experience with Jennifer to paint a richer picture of what my 1000 foot view results are telling me and share that with my readers.”
Mateo’s perspective perfectly summarizes the types of experiences we are hoping to provide. “Most importantly, Jennifer is a perfect example of why myself and many others love our job. Every day we strive to uncover the answers to questions and solutions to problems, all in an effort of improving the lives of those diagnosed with cancer and their loved ones.”
As we work to address opportunities for providers and researchers to gain a better understanding of what living with a given disease is like, we hope to include additional perspectives on themes like cost and convenience of care and emotional support. Through #ColorectalCancer1day, we can to identify areas of opportunity that mean the most to patients.
Ginger added: “It really gets one beyond the image of the very sick cancer patient who can’t get out of bed to the understanding that many people going through treatment have good days and bad days and days that are not terrible but where you decide to will yourself through because you want to feel normal, or you feel an obligations to get things done.
The feeling side of it is the other eye-opening thing about the experience. Reading through all of those journal articles I’ve tried to imagine what it must be like. But going through this experience was similar to the first time I put on glasses and realized, oh wow, I can see each strand of hair. You just don’t know what you aren’t seeing until you can be more intimately in the world of someone experiencing it firsthand.“ Ginger’s words capture the essence of #1day succinctly, speaking directly to the heart of what we try to do every day at Smart Patients.