Last weekend, the world lost a beautiful zebra. The neuroendocrine cancer community uses zebras as their theme, similar to the association between breast cancer and the color pink. The zebra signifies the rarity of this aggressive form of cancer. Jeni, her family, community, and social media network sported zebra slippers, pajamas, ribbons, shirts, and countless other manifestations of zebra prints all to rally support behind Jeni and her fight against this form of cancer.
After many years apart, I reconnected with Jeni and her sister a couple years ago. Jeni was already immersed in her courageous battle, surrounded by an ever-growing community of supporters, both live and virtual, via social media. I followed her story closely on social media, her endless batteries of tests, exams, procedures, and the ups and downs as she waged a heroic battle against one of nature’s cruel twists. Sadly, a couple months ago, she transitioned into a palliative phase. Her posts and photos grew fewer and farther between. Instead, her social media presence was full of thoughts, prayers, well wishes, and throwback photos posted by an incredible and enormous community of friends. This week, this loving community now tries to console Jeni’s grieving family.
Social media helped introduce Jeni to others with this rare form of cancer, and they learned from and supported each other. In the midst of her own suffering, she would visit others with flowers and gifts when they were first diagnosed with cancer. She and her sister turned the chemo sessions into events, always sporting beautiful smiles, flashy new manicures and inspirational t-shirts. Her family was there with her for every session, every MRI, every appointment. Jeni was able to educate her community about neuroendocrine cancer and its progression. Her posts were very informative about cancer, its diagnosis and staging, and various treatment options. They were also informative in showing that there are amazing support communities in social media for people going through such battles as cancer.
So much more than that, Jeni and her amazing family showed her followers how to fight with a constant smile on her face, how to stay positive in terrible times, how to reach out for help, how to be there for one another, and how to care for loved ones as they enter the end-of-life phase of any disease or of life itself.
Healthcare IT is full of interest in patient engagement. To date, this typically means letting a patient see lab results or cryptic procedure reports which are really created for medically trained professionals. After seeing Jeni’s experience on social media, isn’t there some way for patient engagement to mean joining into these virtual and real communities, to inform and support? How powerful would it be for caregivers to be part of this activity? What if instead of visiting the physical home or care facility, nurses, social workers, and treatment teams were also part of these same social media circles, immediately aware of a patient’s turn for the worse and able to help steer their patients and families through stressful and confusing times? For younger generations, social media is the forum for engagement and communication. As these generations age and rely more heavily on healthcare, shouldn’t healthcare IT help connect patients and their caregivers in meaningful and relevant ways geared toward the patient? This would be meaningful patient engagement.