Digital patient advocacy is one area of the profession that medical communicators specialize in especially in regards to rare disease focused organizations. This past February I had the chance to speak with Communications Manager for The American Partnership for Eosinophilic Disorders (APFED), Amity Wescott-Chavez on her role as an essential worker in the field. This is part one of a three-part blog series featuring members of APFED and the role they play in medical communications.
Key: Bold: Michaella Non-Bold: Amity
What do you think are the major skillsets those working in the field of medical communication need to comply with?
“Writing and editing skills are most important, specifically the ability to ‘translate’ medical jargon in a way that is easy for patients and caregivers to understand. It is also essential to grasp the daily challenges that patients and caregivers face and develop/share practical resources that address those challenges. In addition, medical communicators in patient advocacy groups play an essential role in filling some of the gaps that exist between patients and the medical community.”
In your field as Communications Manager for The American Partnership For Eosinophilic Disorders (APFED) what is a typical day like for you?
“As APFED’s Communications Manager, a typical day includes checking and posting on our various social media platforms (Facebook, Twitter, LinkedIn, Instagram), updating our website, and managing the production of our monthly e-newsletter and quarterly member newsletter. Working for a small nonprofit has given me the flexibility to work part-time from home.”
When you were first starting in the field of medical communication what do you feel you wished you knew then that you know now?
“In managing communications for a patient advocacy group, I often field messages on social media asking for medical advice. Patients share their stories and are often desperate for guidance in managing their conditions. I had to quickly learn that there is a very delicate balance between pointing patients/caregivers toward the resources or medical providers they need without offering medical advice. At first, it was difficult for me not to be able to help as much as I wanted to.”
What characteristics of medical communication do you feel go unnoticed that should be given more attention to?
“Medical communicators must operate in two worlds, that of the patient/caregiver community and that of the medical community. It is often assumed that I myself am a medical professional when I really just serve as an intermediary between patients and providers.”
Medical communicators play a devoted role in patient advocacy. What are the most important aspects that we should keep in mind when working with patients and ultimately… working to support them?
“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 don’t 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. 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.”
Where do you look for your inspiration behind medical communication? What education and or professional development has helped you to flourish in the field?
“I often look at the work of other patient advocacy groups representing a variety of diseases. Following them on social media and subscribing to their e-publications gives me new ideas on how to share APFED’s message and better reach our community. Also, the more I’ve learned about eosinophil-associated diseases through medical publications and patient conferences, the better I’ve become at my job. Finally, being part of a small nonprofit with limited resources, I wear many hats in my position and have taught myself basic coding and graphic design because we do not have dedicated staff in those roles.”
How do you go about digital medical communication (ex. social media) knowing that you need to craft a certain message to relay to patients, care givers and the like?
“Oftentimes, I need to simplify medical jargon so that a layperson can understand it. For example, we often share research findings that would be very difficult for the average patient/caregiver to understand. My role is to summarize that information in a more accessible way. When summarizing such information, it’s also important to have it looked at by a medical reviewer to ensure that I’ve summarized it accurately as I am not a medical professional.”
What is the most rewarding aspect of the field? Why did you choose medical communication?
“The most rewarding aspect is being able to reach patients and families in need and connect them with resources and information that address those needs. I became involved in medical communications ten years ago when my infant son was diagnosed with two conditions that made it difficult for him to eat almost all food. While my son is happy and healthy now, I often revisit that feeling of being new to a diagnosis and how overwhelming and confusing it is. Over the years, helping to demystify diseases for patients and families has been incredibly gratifying.”
Are there any words of advice you would like to give to those who aspire to be in the field of medical communication?
“I encourage those who aspire to the field of medical communications to actively connect with the community you represent. Listen to the stories. Go to patient conferences. Work to understand the challenges. It will make your job so much more fulfilling.”