When does your voice matter in patient advocacy in the shared decision-making conversation of breast reconstruction? The sum of events helps me answer this question in my work as a patient advocate. I have a voice, true. However, my voice only becomes amplified by the support, connections, and personal interaction I make through social media with those interested in this topic; plastic surgeons and patients who have lived the experience.
Shared decision making in breast reconstruction after mastectomy means a process the patient and plastic surgeon engage in, resulting in the choice the patient believes is in their best interest. It includes but is not limited to the suggestions made by the plastic surgeon based on skill and years of expertise, being given all options for breast reconstruction, discussing risks and complications, and listening to and respecting the voice of the patient and what they bring to the conversation. This is a very simple explanation. It is far more involved but this is the basic idea.
My first exposure to the concept, shared decision-making, was through the ASPS board certified microsurgeon who performed my DIEP flap breast reconstruction. I understand the concept in its truest form because of being fully engaged in shared decision making with Dr. Chrysopoulo during my entire breast reconstruction process. I just didn’t know the concept had a name until I began building my patient advocacy platform after my successful DIEP flap.
There were days at the beginning of my outreach as a patient advocate I thought my work was falling on deaf ears, or worse, was analyzed and questioned. It was Dr. Chrysopoulo who encouraged me to continue despite the naysayers. He said there will always be critics. In his words, “We are the outliers.” Those words stick with me to this day when met with challenges in patient advocacy in breast reconstruction, especially emphasizing the concept of shared decision making. Not everyone is on board for a variety of reasons. This includes both patients and surgeons. There are patients who do not come to the table fully informed and rely heavily, perhaps too much so, on the surgeon’s opinion. There are still those who take a paternalistic approach to medicine within the plastic surgery community. Our voices as patient advocates and like-minded plastic surgeons can work to change this. Through our discussion, we can promote the value and practice of shared decision making in our communities.
The concept of shared decision making in breast reconstruction cultivated slowly and unfolded for me as I made more connections in the profession of plastic surgery. Drs. Karen Horton and Roy Kim, both ASPS board certified plastic surgeons in San Francisco, joined Dr. Chrysopoulo in championing the first ever patient panel at the annual meeting of plastic surgeons, PSTM, in October of 2017. My voice as a patient advocate was amplified by the work and commitment from these three plastic surgeons.
Through a social media site, I was contacted by yet another ASPS board certified plastic surgeon, Dr. Raman Mahabir. He saw the announcement of the patient panel taking place in Orlando. Not only did he want to attend but also arranged a meeting with me after the panel to discuss the topic further. I was honored, and the meeting took place. His words still resonate with me from the meeting. He stated that surgeons would benefit from hearing our discussion at the panel.
He followed through from our meeting and his comment in Orlando. Dr. Mahabir arranged another patient panel on shared decision-making May 12, 2018, at the annual meeting of the Arizona chapter of the American Society of Plastic Surgeons. I am honored and excited about the opportunity. Why? Because the time and interest from Dr. Mahabir at PSTM17 leads to ongoing discussion about the importance of this topic.
I will be on a panel and speaking with another recent breast reconstruction patient, Margaret. She has been instrumental in educating others about her Journey through breast reconstruction as a BRCA gene mutation patient who chose a prophylactic mastectomy and implant-based reconstruction.
I cannot do this work on my own. Although I am an affiliate member of the American Society of Plastic Surgeons, patient advocates do not sit on their committees, at least not yet. My hope is this changes in my life time as a patient advocate in breast reconstruction through continued and positive collaboration. We are making strides and I only know one way to move … FORWARD!
No matter what form of advocacy work you take on, connect with those who care and are passionate about your cause. Thank you to those plastic surgeons and patients who continue to embrace the work of patient advocacy and shared decision making in breast reconstruction.
