Thank you so much for joining us in this interview series! Our readers would love to “get to know you” better. Can you share your “backstory” with us?
Dena Feingold: I came to the field of patient advocacy when my third child was born with a rare genetic disease, Gaucher disease. Although I worked in advocacy and engagement for nonprofits in healthcare and covered health and fitness stories as a journalist, I never thought I would be faced with confronting medical issues on such a personal level. I was disheartened by medical encounters with healthcare teams; in fact, I was frustrated with countless mistakes, poor communication, and lack of care coordination. And there was no playbook or path to follow — we had to find our own way through the healthcare maze. I thought about how other families were probably also frustrated and scared trying to figure all of this out. So I decided to pivot in my career and become a patient advocate for families who also need help navigating thecomplexities of the medical system while managing a child with a rare disease.
Can you share the most interesting story that happened to you since you started your career? What were the main lessons or takeaways from that story?
Dena Feingold: As an advocate, I’ve been volunteering to help create a Rare Disease Advisory Council in California, where I am based. The council will serve organizations for patients with rare diseases and will give patients a voice in state government. This council is appointed by the Governor, but it must be approved in a bill by the state senate. Recently, I had a tremendous opportunity to support the bill with a statement before the California Senate, which was so cool! It’s been interesting to learn about the process of advising state government and to navigate the legislative process and be a part of changing laws. The best part is that I can share this communal and collective experience with many like-minded people — pair my passion for patient advocacy while working with the collective ideals of the rare disease population to benefit public health.
Can you share a story about the biggest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
Dena Feingold: I think the biggest mistake was underestimating the amount people who need help — it is a considerably underserved community. I specialize in a niche market — pediatric rare disease advocacy — and quickly learned there are many people out there who need support and assistance to get what they need and want from the healthcare system.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story about that?
Dena Feingold: Trisha Torrey is someone who I consider to be a leader in patient empowerment and patient advocacy, and she has mentored me as I have put my practice together. She has cultivated an educational resource, the Alliance of Professional Health Advocates, for emerging and seasoned patient advocates who are bridging their skills between advocacy and business. She has been my cheerleader, inspiration, and supporter. When I was in the early stages of developing my scope of services, I wanted to be everything to everyone and I didn’t have a lot of confidence in myself to narrow down my services to the very personal market that is one inch wide and a mile deep. Trisha really gave me the confidence to find my own space in advocacy and reminded me how much peace of mind I will bring to families who need help.
Ok perfect. Now let’s jump to our main focus. When it comes to health and wellness, how is the work you are doing helping to make a bigger impact in the world?
Dena Feingold: The field of patient advocacy is in this emerging state of global public awareness and as we build our identity, and more people learn about how we can help them influence better health outcomes and maximize their health and safety, our impact as advocates will be even greater. I tell people what I do professionally and it is usually met with “gee…I wish I had known about you when my mom had a stroke, or I could have used your services when I couldn’t get my insurance to cover my medications,” or “insert your medical encounter here.” We are here to help sort out confusion and uncertainty and to help patients make informed choices and decisions. There is nothing more personal than one’s own health — it’s the most valuable thing we own — and, as an advocate, I am here to help you protect it.
Can you share your top five “lifestyle tweaks” that you believe will help support people’s journey towards better wellbeing? Please give an example or story for each.
If you could start a movement that would bring the most amount of wellness to the most amount of people, what would that be?
Dena Feingold: Unquestionably, I would say everyone needs to have an advocate present at any medical encounter. It doesn’t necessarily have to be a paid professional, but someone who can be your second set of eyes and ears during healthcare interactions. They can be a friend, family member, or a paid professional who is there to help maximize interactions and support you to be sure you are receiving patient-centered care. And, if you can, pick someone ahead of time, before an illness strikes.
What are your “5 Things I Wish Someone Told Me Before I Started” and why?
Sustainability, veganism, mental health and environmental changes are big topics at the moment. Which one of these causes is dearest to you, and why?
Dena Feingold: Because I see people in distressing situations, I feel more energy needs to be focused on mental health in healthcare. One moment you are living your life as normal, and then the next thing you know, you’re blindsided by a medical diagnosis in yourself or a child. Illness affects everyone in a family, and you never know how you will react or cope and how relationships will be affected — the emotional ramifications and expectations can manifest in unanticipated ways.
What is the best way our readers can follow you on social media?