“When you have a rare disease. You face two battles. One being the illness itself. And the other. Living in a world where so few people understand what you’re up against” ~Anonymous
Welcome to my thesis project titled “A Medical Communicator’s Role in Digital Patient Advocacy.” I graduated from the University of Massachusetts Dartmouth in 2018 with a Bachelor’s in English with a concentration in Writing, Rhetoric, and Communication. Come May 2021 I will obtain a Master’s Degree from UMass Dartmouth in the study of Professional Writing & Communication. The following thesis is inspired by my passion for rare disease studies as my mother, Madaline Lesieur was diagnosed with Hypereosinophilic Syndrome (HES) in 2001. Since, then I have been driven to vocalize the importance of shedding light to rare diseases in order to impact for change. For a better medical system, for more awareness and for medical communicators to help facilitate in the race for cures.
Medical communicators are essential to the field of digital patient advocacy. Communication amongst the online space with patients poses major gaps in the system. Medical communicators can help facilitate these gaps and provide support through various modes of educational materials through digital platforms… My thesis works as an interactive blog website that spotlights key benchmarks in the field. This includes defining the field of medical communication, the work they do and a detailed explanation of key terms. Likewise, an tool kit has been organized to showcase examples of digital patient advocacy in which I have created. The following modes will help portray the importance of medical communicators to the field.
Throughout my graduate studies program I was motivated to embark on the following study to raise awareness for rare diseases such as HES and to establish the importance of medical communication for digital patient advocacy. This included defining myself in the field of a medical communicator and the essential roll they serve in the rare disease spectrum. This Spring (2021) A Medical Communicator’s Role in Digital Patient Advocacy had the honor of winning the University of Massachusetts Dartmouth’s Dean’s Graduate Thesis Support Grant which is a program designed to support graduate student research.
Acknowledgements
Thank you to all those who have supported and inspired my journey along the way and to go after all my dreams. A special thank you to my mother Madaline Lesieur, brother Corey Lesieur, father Bob Lesieur, Katharine Wencour, Angela Black, Casey Donlan, Sarah Weisberg, Jamieson Toulan, and family, friends & friends that have become family, my thesis committee: Karen Gulbrandsen & Caitlin O’Neil Amaral, UMass Instructor Katie DeLuca, Deans Graduate Support Grant Program, The American Partnership for Eosinophilic Disorders team: Executive Director, Mary Jo Strobel and Communications Manager Amity-Westcott Chavez, My extended EOS family: K.E. Plunkett, Colleen Plunkett & Kristina Andrews and to all those that have touched my project, the awareness campaign and vision board in some way. I love you all!
