A Medical Communicators Role in Digital Patient Advocacy explores the role a medical communicator holds in digital patient advocacy in the rare disease realm. With a rhetorical lens my thesis takes a closer look at how this manifests in the digital space (ex. social media, websites, blogs, non-profits and etc.). For the purpose of my thesis, I designed a blog website that works to house examples of digital patient advocacy and research. The inspiration for my thesis stems from my mother’s diagnosis of a rare blood disease called, Hypereosinophilic Syndrome (HES) in 2001, a time where we did not know where to turn, there was little to no education and within that doctors not knowing how to properly inform us. Since, then I have worked to advocate. Watching my mom walk through life with a silent illness and having other family and friends that have been diagnosed with a rare disease reveals just how important it is that we stand up and have a voice for a broken medical system that needs our help. The major takeaway from my thesis being that society needs more medical communicators to help bridge the gap between patient advocacy and physicians. Rare diseases need to be properly facilitated and given the light they deserve to become a household term and ultimately a more efficient way to providing support for patients and their caregivers. This can be reinforced when looking over to my research, the following interview with the Communications Manager for The American Partnership for Eosinophilic Disorders (APFED), Amity Wescott-Chaves states the following:
Writing medical communications for two patient advocacy groups has made me understand some of the gaps that exists between patients and families and the medical community. Often times, providers do not fully understand the many burdens created by these medical conditions, including financial and psychosocial burdens. The role of the patient advocacy group is to help inform the medical community of the real-world challenges that these patients and families are facing, said Wescott-Chaves. For example, APFED has been working to bring attention to the difficult transition that many pediatric patients face when they become adults and must manage their own care and find new providers who deal with adult patients and are familiar with eosinophil-associated diseases (Wescott-Chaves).
When making a presence in the digital space medical communicators are able to reach a high volume of people and bring them together to forge a community and sub communities. Being able to educate, break down medical jargon, connect patients with others and raise awareness for rare diseases is a huge component to the field. The best way in doing this is to listen, share and tell the stories that these patients and their families face. Break the silence and generate a voice that works to create an image that these illnesses are very real. Based on my study this proposition of a more inclusive and personal space has to be pushed to the forefront. My goals for future work is to continue to advocate and find the best measures in which we can do so and how medical communicators can keep up with the needs of critical rare disease knowledge.
MAJOR TAKEAWAYS: INFOGRAPHIC
For a complete reflection on the following blog and the accompanying mediums please download the essay.