Women At Work: An Interview with Family Leadership Coach Erin Moore
Women at Work is an interview series sharing stories of women like you, who are building their lives on their own terms and shedding light on the highs, lows, and everything in between. Every other month we’re bringing you inspiring conversations from women around the world who are paving the way and empowering us to dream and do.
A former marketer turned stay at home mom turned ePatient and healthcare innovation consultant, to say Erin Moore wears many hats is an understatement. Erin, who was an ePatient advisor for Eli Lilly and Company before she took on her role as the Content Marketing Strategist for their Clinical Innovation team, has been leading the way in patient partnership with companies like Lilly and Pursuit, and most recently Shift Results where she works as a Family Leadership Coach. She partners with different team members to offer thoughtful feedback and has helped keep the patient voice front and center. Her inspiration to create an equitable space for patients stems from her son Drew’s diagnosis with cystic fibrosis.
If you aren’t familiar with cystic fibrosis, it’s a genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the U.S. After her son’s diagnosis in 2010, Erin quickly stepped into the role of advocate. She began sharing her family’s journey on her blog 66 Roses and speaking out on behalf of patients and caregivers and on the importance of partnering in your care to improve your chance of a good health outcome on social media.
“65 Roses is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce. This blog, 66 Roses, is dedicated to finding the cure,” she explains.
Drew, who is now almost 9 years old, goes through a rigorous daily regime of medications and treatments, which include airway clearance exercises and a nebulizer through which he inhales a variety of medications aimed at keeping his lungs free from infection. Drew sits through these treatments for up to 2 hours a day. In an effort to improve his quality of life, Erin went to the internet looking for ways to improve the experience of his treatments by allowing him to do what he loves — playing video games — without compromising the quality of treatments. Having to hold the nebulizer with one hand, it only left him with one free hand to play games that mostly required two.
“I threw a tweet out into the universe looking for good ideas on how to create a hands-free nebulizer for Drew. What transpired was nothing short of magical. People from around the globe and in a variety of industries and roles shared their ideas and feedback on what we could do to solve this problem. A solution now lives on the Maker Health website,” she says, “and another more technical solution is currently in development with Autonomy Medical that will allow him to control a video game with his breath.”
Interactions such as this one unveiled the power that Erin’s story held. It was through ongoing engagements like the one above that led her down the path of becoming an ePatient. She became involved with the Cystic Fibrosis Foundation and served as the State Advocacy Chair in Ohio, meeting with local politicians to share the policy agenda of the Foundation enhanced with a personal story about how the decisions they were making were impacting my son and my community.
“My expertise is my experience and in order to create the change that we so desperately need in the cystic fibrosis community I not only have to speak up but I have to find a way to empower others to do the same. I became a more vocal advocate for my son and his unique needs both inside and outside of the clinic room and at the point of care. I created the change that I needed, sharing what I was doing, and embracing learning more about the experiences of my peers. This is how I define being an ePatient: using what I have and what I know to influence positive change in health care,” she explains. Her energy and effort earned Erin recognition at the national level when she was invited to the White House in 2016 where she partnered with Stanford MedicineX and the White House Office of Science & Technology Policy to focus on President Obama’s Precision Medicine initiative.
Being an activist and ePatient isn’t the only hat Erin wears though. Along with being a mom to Drew, she is also a mom to 4 other children, including the newest member of their family, 6 month old baby Lucy. I know you’re wondering what we’re always wondering, which is wait… five kids…how does she get it done?
Erin’s days start early, getting Drew up around 6am for his morning medications then breathing treatments. With the other kids awake shortly after, they divide and conquer, making breakfasts, packing lunches and getting everyone ready for school and daycare. Once the kids are out the door and after a quick clean up, Erin gets to work checking emails and joining meetings with her laser focus on finding ways for patients and caregivers to partner with the professionals serving them to improve care and outcomes. In between work meetings, Erin is regularly pulled into prescription reordering, insurance and billing negotiating, appointment scheduling and symptom monitoring. She’s a rigorous tracker of things related to Drew’s health, and uses her own data to guide decision making with Drew’s care team. After school, there are more treatments, sports practices and homework.
“Eating dinner together every night is important to our family and I’d say we are able to do it about 95% of the time.” One more round of treatments before bed, often a load of laundry or two, and some goodnight stories round out the day. With the kids in bed, they have to prep for the next day — sterilizing all of Drew’s equipment, preparing mediations, planning their schedule — because they never know what might be handed to them next, or when. “Every day is unique with this disease, and we just have to be nimble because we are never sure what life or work might throw at us.”
To add to this already full schedule, Erin also serves as an FDA Patient Representative and heads to the D.C area when called upon to offer the patient perspective when drugs or devices relating to cystic fibrosis are brought before the FDA for review. She is often invited to speak to companies or organizations about the valuable role that patients and caregivers play in healthcare improvement. There always seems to be a new opportunity looking for this unique perspective, and although these opportunities excite her and often give her hope that change is happening, she tries to limit her time away as family remains her number one priority.
“I don’t take for granted how fortunate I am to have so many wonderful opportunities present themselves. This is how I support the communities that I care about, through advocacy and activism. Both my work and my family are incredibly important to me. I’ve had to learn to prioritize and set boundaries — I can’t do it all, and when I try to, no one gets my best work. I hope that through my life and my work I am not only impacting positive change, but also setting an example for my children of dedication and love.”
Erin’s story is one of empowerment and courage. There are certainly tough days, but hope gets her through. She says, “ I’ve had this incredible opportunity to learn from so many different people and places that came about simply through sharing my story. I have an endless hope that people like my son Drew can be well, retaining the autonomy to make decisions in their life according to their own priorities, not according to their disease. I’m committed to using what I learn to make things better and better.”
Women At Work: An Interview with Family Leadership Coach Erin Moore
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