WOW! The day was long but impactful. I tweeted highlights from the IMF Satellite Symposium, “Treatment Advances in Multiple Myeloma Expert Perspectives on Translating Clinical Data to Practice.” Summarizing information in 140 coherent characters has presented a bit of a challenge for me. I tend to process and analyze information (over-analyze if you ask my husband) in a way that isn’t consistent with real-time tweeting during live talks (a social media form of being uncoordinated). So blogging is probably a more therapeutic way for to capture my experiences at #ASH16. However, I’ve gone from about 5 tweets pre-ASH to roughly 40 tweets since arriving at ASH (wahoo).
Throughout the day, I asked myself how I could capture experiences as a first-time attendee in a way that would offer inspiration and hope through blogging. Today, the word “empowerment” stood out clearly. I’ve been strongly inspired by a sense of empowerment, and the significance of being included as a patient in the conversation of myeloma. Before now, I hadn’t considered the value of the patient being a part of the broader research and treatment discussion. While I’m aware it occurs in healthcare, it wasn’t until now that I appreciated a sense of empowerment that I, the patient, would experience. Sure, we all know that patients should be a part of our own treatment conversation, but being present in the room with thousands of myeloma experts gives me new meaning to what it really means to be a part of the conversation.
I also pondered the question, “How can other patients feel empowered and a part of the broader conversation that affects care and health in a way that gives them hope?” I would like to think that all providers would want their patients to be informed and knowledgeable about their care in a way that strengthens the partnership and treatment. But, what about the conversations that occur prior and/or in addition to that at the bedside? Those that happen in meetings and conferences.
Recently, BMJ published an article, “Nothing About Us Without Us: Patient Partnership in Medical Conferences,” which describes the benefits of including patients as partners in medical conferences. The authors describe the value in patient involvement to help drive the discussion and disseminate knowledge. The IMF gets it and are trailblazers in involving patients in the discussion and knowledge dissemination, hence, another reason for myeloma HOPE.
Participation in medical conferences is only one way to join the conversation, I believe. Each of us can find a voice to engage in conversation with our providers as well as through various educational means. I believe we gain our voice through knowledge. In addition to the cutting-edge information from ASH on day one, I am inspired by the amazing, well informed support group leaders who surround me here at #ASH16. I only hope one day I’ll be as knowledgeable as they are. Until that time, I will continue to do my part to spread HOPE, something that I believe in with all my heart. We have a voice, an opinion, and most definitely a stake in every word uttered as it relates to the treatment and management of multiple myeloma. Each of us has to decide how and if we choose to become empowered and convert that to the action of empowerment.
Wishing you Faith and Hope,
Tiffany H. Williams
“It’s not always necessary to be strong, but to feel strong.”
― Jon Krakauer, Into the Wild
Chu, L. F., Utengen, A., Curdy, B., Kucharski, S. E., Campos, H., Crockett, J . . . Clauson, K. A. (2016). “Nothing about us without us—patient partnership in medical conferences.” BMJ, I3883. doi:10.1136/bmj.i3883