Female Disruptors: Nicoletta Sozansky of Healthcare Redefined On The Three Things You Need To Shake Up Your Industry
An Interview With Dina Aletras
Chronic illness is a marathon: I can relate to this quote as a chronic illness patient and Patient Advocate. Chronic illness is a journey, and you will face setbacks and learn from them. Through this, it is crucial to have a great medical team that you trust and a community that supports you. That’s the main driver behind Healthcare Redefined.
As a part of our series about women who are shaking things up in their industry, we had the pleasure of interviewing Nicoletta Sozansky.
Nicoletta is a Board Certified Patient Advocate (BCPA), Founder of Healthcare Redefined, and the proud mother of a Congenital Diaphragmatic Hernia (CDH) warrior. Understanding firsthand how physically and mentally draining misinformation, lack of support, and financial strain can be, Nicoletta founded Healthcare Redefined in 2024 to address these challenges head-on for other patients. From scheduling second opinions and identifying top-ranked Centers of Excellence for acute and chronic conditions to researching clinical trials, handling insurance appeals, and reviewing medical bills, she is dedicated to advocating for her clients and guiding them through their medical journey every step of the way.
Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”? What led you to this particular career path?
In a way, I didn’t choose patient advocacy–patient advocacy chose me. My journey to becoming a patient advocate began over a decade ago. After a series of complex health issues, inadequate care, and misdiagnosis, I embarked on my own extensive medical research. Once faced with the diagnosis of Mast Cell Activation Syndrome (MCAS) and then my daughter Aspen’s diagnosis of Congenital Diaphragmatic Hernia (CDH), I recognized an urgent need for compassionate patient advocacy in navigating the complexities of the U.S. healthcare system. Understanding firsthand how physically and mentally draining misinformation, lack of support, and financial strain can be, I founded Healthcare Redefined in 2024 to address these challenges head-on for other patients. I was inspired by my personal medical journey and a passion for true patient advocacy.
Our mission is to guide patients through the complex healthcare landscape, providing tailored support and research to ensure they receive the best care possible. From securing second opinions to coordinating care with world-renowned physicians, Healthcare Redefined is here to take on the burden of navigating the U.S. healthcare system.
Can you tell our readers what it is about the work you’re doing that’s disruptive?
It is no secret that the U.S. healthcare system is severely lacking–in fact, a recent study from the Commonwealth Fund found that “Americans live the sickest lives and die the youngest”. Disruptive change is severely needed to provide Americans access to the healthcare they deserve, and I aim to be part of that change through my work as a Board Certified Patient Advocate (BCPA) and founder of Healthcare Redefined–a first-of-its-kind Concierge Healthcare Navigation company dedicated to addressing the needs of today’s patients by offering comprehensive navigation tools to demystify the medical care process and help ensure clients receive the most accurate treatment.
Through my experience as a chronic illness patient and a mother to a survivor of a life-threatening condition, Healthcare Redefined is uniquely positioned to provide clients with options when facing critical health issues despite their complexity, allowing them to focus on their health and well-being. We offer personalized support–including coordinating 2nd opinions, identifying best physicians and top-ranked Centers of Excellence for acute and chronic conditions, managing insurance appeals, and reviewing medical bills–all to advocate for our clients and guide them through their medical journey every step of the way.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
It took me quite some time to come up with my company’s name. I wanted it to be meaningful and convey a positive change in the healthcare industry, as defined by our mission and promise. Then, one day, it all just clicked, and “Healthcare Redefined” was born. I loved the name as it embodied me and my daughter’s health journeys that were very different when it comes to diagnosis, but so similar in terms of finding the best medical care that changed our lives for the better (patient advocacy literally saved my daughter’s life!).
A few months before launching Healthcare Redefined, however, I was asked to change the company’s name for the purposes of our marketing campaign. I reluctantly agreed and shortlisted a few unique names that sounded very foreign. The problem was that none of my friends could pronounce those names! After spending a good couple of weeks searching for a new name, I decided to stick with Healthcare Redefined. Going with a name that the majority of folks could not pronounce was probably the funniest mistake I “almost” made.
We all need a little help along the journey. Who have been some of your mentors? Can you share a story about how they made an impact?
I came to the U.S. over two decades ago with no friends and no connections. I worked full-time, juggling multiple jobs, often underpaid, with no health insurance or sick days. At the same time, I was at school trying to finish my degree. The tough became tougher when I started experiencing chronic health issues that went undiagnosed for too many years. I had to juggle full-time work, full-time-studies, and full-time illness.
While trying to find the root cause of my health challenges, I started to connect with members of various communities who experienced rare health issues and work with doctors who genuinely listened and offered solutions beyond standard cookie-cutter treatments. The support and guidance that came very early in the process from other members of the community was incredibly empowering. It transformed this completely alienating experience of being chronically ill, and gave me strength to continue and push harder–first, when searching for answers about my own health, and then when facing my daughter’s Congenital Diaphragmatic Hernia (CDH) diagnosis. No big names here; just tremendous support from the community validating me and the choices I was making, despite facing significant adversity (medical gaslighting being one of them). Those early relationships were pivotal to shaping me and my journey–it almost became second nature for me to advocate not only for me and my family, but virtually anyone in my social circle.
In today’s parlance, being disruptive is usually a positive adjective. But is disrupting always good? When do we say the converse, that a system or structure has ‘withstood the test of time’? Can you articulate to our readers when disrupting an industry is positive, and when disrupting an industry is ‘not so positive’? Can you share some examples of what you mean?
My daughter is a Congenital Diaphragmatic Hernia (CDH) survivor. Had she been born the same year as me, she would only have a 2% chance to get to where she is now. Even reviewing scholarly articles from 10–15 years ago about CDH paints a very bleak picture for newly diagnosed parents. From saving lives to making patient experience more convenient via telehealth, the impact of disruption and innovation is indisputable.
As patients, we love the (almost) instant medical care we can receive without stepping out of our homes, which would seem like a great idea for one-time encounters. However, an area where the new health disruptors are lacking is personalization of care; the simple relationship that patients build with their physicians over the years. Automation often reduces human interaction between patients and healthcare providers that may not only lead to miscommunication and confusion, but also remove the element of empathy from patient care.
For patients who are facing complex, chronic or rare medical conditions, the connection with their physician who directs their care is invaluable. My first appointment with the doctor who finally diagnosed me with Mast Cell Activation Syndrome (MCAS) took 3 hours! This is why I’m advocating for personalized care as I believe it yields the best results which can be enhanced by use of automation and technology for already established relationships.
Can you share 3 of the best words of advice you’ve gotten along your journey? Please give a story or example for each.
1. Do your research: Researching all possibilities before making a decision is pivotal in healthcare. In many situations, when a patient’s life is at stake, the family or patient needs to make an urgent choice. That was me 3 years ago when I entrusted my unborn daughter’s care to the CDH team. Before doing so, I spent a significant amount of time talking to the team, inquiring about statistics and numbers, studying their approach, and reaching out to previous patients’ parents to learn from their journey. When my daughter was born, I was certain that she was in the best place. As a patient advocate, I employ that same approach — I want my clients to feel empowered and at peace by helping them make their decisions according to evidence-based research.
2. Greatness comes from pain: I find this advice highly motivating as it resonates so strongly with almost every chronic, invisible, or rare illness patient’s journey. In today’s society, while we are being taught compassion towards people with health problems, healthy and strong individuals are almost exclusively portrayed as winners and high achievers. I hope to see the narrative change over time as chronic illness patients deserve more recognition, especially in work settings where checking a “disability box” is almost equivalent to having a resume pushed down to the bottom of the pile.
3. Chronic illness is a marathon: I can relate to this quote as a chronic illness patient and Patient Advocate. Chronic illness is a journey, and you will face setbacks and learn from them. Through this, it is crucial to have a great medical team that you trust and a community that supports you. That’s the main driver behind Healthcare Redefined.
We are sure you aren’t done. How are you going to shake things up next?
We are just getting started here! While the primary goal is to establish our presence in the healthcare space to create a community where patients feel safe and empowered, I am also excited to employ more people who, like me, are parents to a survivor or survivors themselves–people who lived and breathed this experience and want to use their knowledge to be a guiding light for others. As a patient, the support and guidance in terms of navigating the system that I have received from those who fought the same battle as me has been invaluable; as is bringing this experience to patient advocacy and healthcare navigation. A BCPA with real-life expertise is the most powerful combination to challenge the existing status quo.
In your opinion, what are the biggest challenges faced by ‘women disruptors’ that aren’t typically faced by their male counterparts?
Although women make up roughly half of the population, their health issues have historically been neglected due to gender bias, leading to negligence in healthcare research and delayed care for both women-specific and general health conditions. Those gaps in women’s healthcare are being inflated by rampant medical gaslighting. Being a woman disruptor addressing these gaps definitely has its challenges.
Another interesting area to explore in terms of challenges is the professional background of healthcare disruptors. As an outsider by trade coming from the banking industry, I feel navigating a career 180 is another unseen barrier. However, an overwhelming majority of founders with successful debuts in the healthcare space had no formal medical training. As a BCPA, I’m bringing to the table crucial skills my medical care team lacked when I was a patient myself. One of them is research skills allowing me to identify the best physician, top surgeon, or the best treatment center for patients who are facing chronic or acute illnesses. The power of research I perfected during my previous career ventures and personal medical journey changed my life for the better and saved my daughter’s life, so it is a crucial skill I would love to see being utilized more by today’s providers.
Do you have a book/podcast/talk that’s had a deep impact on your thinking? Can you share a story with us?
A book that changed my life was “Never Bet Against OCCAM” by Dr. Lawrence Afrin. The book describes his pioneering work in the area of Mast Cell Activation Syndrome (MCAS). It was released prior to my own diagnosis, when no doctor could figure out why I was feeling unwell and losing weight. I vividly remember taking a red-eye flight to Europe and reading the book line by line. When I landed in the morning, I was a changed person–not only because what Dr. Afrin described matched what I had been going through for so many years, but because the book and the work he has done made me a believer that there are great doctors out there who will not leave a stone unturned to help patients find the answers they desperately need.
After returning to the U.S., I contacted Dr. Afrin and became his patient. He diagnosed me with MCAS, and thanks to his guidance and treatment, I started improving both physically and mentally. It’s not only the book that impacted me, but also Dr. Afrin’s ethics–he recognizes the fact that he cannot be a principal provider for patients not living in his area, and offers his guidance and expertise to other doctors to educate about MCAS and help them properly diagnose and start treating other patients.
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. :-)
I would like to see more conversation surrounding rare and invisible illnesses. And when we say “rare”, sometimes they are actually more common than we may think. Most people have heard about Cystic Fibrosis (CF) — but did you know that Congenital Diaphragmatic Hernia is as common as CF, and that there’s a serious lack of awareness about it among the general population or even expectant mothers? Furthermore, lack of knowledge goes hand-in-hand with lack of funding. We urgently need more funding for research, training, and education to give affected children the surviving chance they deserve.
Additionally, invisible illnesses, most of which fall under women’s health, are also severely glossed over in healthcare discourse–such as endometriosis, PCOS, lupus, fibromyalgia, Chronic Fatigue Syndrome (CFS), Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and many more. Today, for example, it may take up to 10+ years to diagnose endometriosis or MCAS. Not only does the narrative surrounding these illnesses need to shift, but we need more trained providers who are knowledgeable about diagnosis and treatment.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“One day you will tell your story of how you’ve overcome what you went through and it will be someone else’s survival guide.” (Brene Brown)
This is what Healthcare Redefined is all about, built with my own and my daughter’s personal stories of struggle, hope and ultimate survival as the foundation. We were both faced with different health challenges, which we were able to overcome with the help of medical research, patient advocacy, and healthcare navigation.
As the founder of Healthcare Redefined, I want to help my clients reach a point where their own health journey becomes a story of hope, happiness, and inspiration. I strongly believe that improving healthcare results from early diagnosis to survivorship is entirely possible through patient advocacy and healthcare navigation, and these services are essential for anyone who is facing life-altering or chronic illness to remove barriers to proper care and redefine the patient experience.
How can our readers follow you online?
Website: https://thehealthcareredefined.com/
Instagram: @healthcareredefined
Facebook: @thehealthcareredefined
This was very inspiring. Thank you so much for joining us!
About the Interviewer: Dina Aletras boasts over 20 years of expertise in the corporate media industry. She possesses an in-depth understanding of growth, strategy, and leadership, having held significant roles at some of the UK’s largest media organizations. At Reach PLC, the UK’s largest tabloid publisher, she served in various director capacities. Additionally, she held leadership roles at The Independent Magazine Group and DMGT. Her extensive knowledge spans editorial, digital, revenue, sales, and advertising.
Upon relocating to Switzerland, Dina took on the responsibility of managing and promoting the international section of Corriere del Ticino — CdT.ch pioneering the English page “onthespot.” She also was the Co-Editor of Southern Switzerland’s first official Italian and English bilingual magazine.
