ENGAGEMENT AND COMMUNITY
My desire to become an oncologist was nested in one goal- to help achieve better: better treatments, better survival curves, better quality of life. I laid out a career built in patient care, clinical research, and novel therapeutic clinical trials, and for the most part, that’s the path that I’ve stuck to, and overall, I’m incredibly lucky to be doing something that brings me so much satisfaction. We may not have cured cancer, but steps- important ones- have been taken whether it be in the expanding treatment options, less toxic treatments, and the broadening recognition that toxicities- mental, physical, and financial- are as important as the activity of any drugs we prescribe.
I had not intended to venture in to social media and digital engagement, nor did I plan on a burgeoning passion in this arena, but I’ve ended up here too and I’ve learned about an entire dimension to the clinical experience- Patient Engagement. I’ve discussed the latest data with many Patients, talked about their priorities, and I’ve learned about what they want from us, medical providers- and for the most part, these are Patients I’ve never seen in clinic. Alongside my colleague, Theresa Hagan Thomas, we solicited advice about survivorship care from them using Twitter and the #gyncsm platform and that work is on its way to publication. I’ve found engagement a way to grow as a clinician and to see all of my patients not as a “cancer patient” but a woman, with cancer, but so much more despite it. If I’ve learned so much from these ongoing conversations, and you know what? Others can too- and not just clinicians, but other women with gynecologic cancer and the ones that support them.
With that in mind, I am honored to be a part of a new experience: to grow an ovarian cancer community in support of the global effort to end women’s cancers by Globe-A-Thon and specifically, the Ovarian Cancer Registry. This registry will enlist women with ovarian cancer history to proactively get involved by sharing your data, participating in data collection on a go forward basis, and be a part of new studies. As designed by the clinical team headed by Dr. G. Larry Maxwell at Inova, though, it is not meant to be unidirectional. He envisions a bidirectional flow of information and communication, and at the heart of it will be a new community. My part will be to harness the power of social media to generate and sustain the community and to do that, mine cannot be the only voice. In fact, mine should be the least heard! Therefore, we’ve partnered with some incredible women to be the heart of the blog and I am excited to see what they say. THANK YOU to Annie Ellis, Dee Sparacio, Teri Woodhull, Susan Leighton, and Kristina Abalos for joining me in this experience to build this long overdue community.
So, stay tuned! And for all of those living with ovarian cancer, know that there is a community for you. And it starts here.
Globe-athon is proud to partner with Smart Patients, an online community where patients learn from each other about their cancer journeys. On Smart Patients, you can discuss issues raised in this blog post and beyond. Join here: https://www.
