On the 8th Day of #HITChristmas we’re excited to feature, Erin Moriarty Wade a Healthcare Writer and Caregiver.
Tell us a little bit about yourself and your experience with healthcare.
I spent more than a decade writing about healthcare as a very healthy person with no significant personal experience in healthcare — first as a reporter and then as a content writer for healthcare organizations. When our daughter got sick five years ago and was diagnosed with a rare disease, everything changed. I stopped working temporarily to manage her medical needs, which involved four days a week at one children’s hospital, a monthly infusion at a different hospital and many other challenges. When I began working again, I realized I had new insights from these difficult experiences that I wanted to use in a positive way. I got involved with Savvy Coop, helped design EyeForPharma conferences for pharmaceutical executives and started participating in #hcldr chats. More recently, I became part of a working group of physicians and parents through Childhood Arthritis and Rheumatology Research Alliance (CARRA). I also just joined an advisory panel for the design of a clinical trial, which I am very excited about.
For the past year, I have been working part-time as a content specialist for myTomorrows, a company that helps patients and physicians find and access clinical trials and other pre-approval treatment options. The company’s services of providing information about treatment options and how to access them are always free of charge for patients and physicians. On a professional level, I really enjoy helping develop the company’s healthcare content, and on a personal level, I am passionate about the work myTomorrows is doing because I understand firsthand how important it is to patients with unmet medical need like my daughter.
What should healthcare understand about what it’s like to be a mom of a child with a rare disease?
We are experts in lived experience, from giving a child an injection and administering an IV treatment at home to managing 504 plans and navigating insurance reimbursement. We are resilient and agile (I’m sitting in a hospital infusion center as I write this).
We are always extremely grateful for the physicians, nurses, infusion nurses, physical therapists, teachers, school nurses and school counselors who work so hard to make sure our kids have the best possible experience and quality of life. There are so many of them who have made an incredible difference to our daughter and our family!
What advice would you give to parents in a similar situation?
Find your tribe! Connecting with people who understand your circumstances can make a huge difference in your wellbeing and help you feel more centered and less alone. Find a group through Inspire, Facebook or your patient advocacy group to share insights and get support. Secondly, learn everything you can about the disease and all possible treatment options.
How could healthcare IT help to improve your life as a parent and caregiver?
Like many people who deal with challenging health conditions (especially being immunocompromised), I hope that everything doesn’t just “go back to normal” after the pandemic. I am grateful for the new virtual opportunities, from telehealth visits with pediatric specialists to free access to virtual conferences and webinars. However, I remember a few years ago when I juggled so many appointments, there were almost never any telehealth options. I recall searching unsuccessfully for any virtual options for physical therapy after my daughter was “kicked out” of a facility because she was severely immunocompromised.
As a healthcare writer, what are some keys to writing effectively for healthcare?
Determine who your target audience is and understand what their pain points are.
Figure out what the real story is and why it matters. It’s rarely a product or service, but rather the lives that are affected or the passion of the people behind the technology. Here’s an example of a story I wrote about a physician who created an app to help EMS personnel get stroke victims to the right hospitals faster. Here’s one I wrote about a patient’s efforts to find clinical trials.
Before you start writing, distill your story into a straightforward explanation (similar to an elevator pitch). If someone asked you “what’s the story about?” and you had to answer them in a couple of quick sentences, what you would tell them? Keep this in mind when you sit down to write, whether it’s a press release, blog or web copy.
Try to avoid business jargon and unnecessarily complex healthcare terms.
What can the health IT community do to help you?
I am currently looking to do some very brief, informational interviews with oncologists practicing outside of academic medical centers (not for publication) for a project I am working on. If anyone knows someone who might be willing to chat, please let me know.
Be sure to follow all of the 12 Day of #HITChristmas.