Use your time wisely: Be prepared for your medical encounters by doing your research ahead of your appointment to ask informed questions. You don’t want to get home and suddenly remember something you wished you had asked, or maybe had forgotten to share information. Maximize your time with your providers with a list of questions. Preparation will give you the confidence to go into your appointment empowered and ready for a productive visit.
As a part of my series about the women in wellness, I had the pleasure of interviewing Dena Feingold, Board Certified Patient Advocate.
Dena Feingold is a Board Certified Patient Advocate who understands the challenges of navigating a medical diagnosis and a complicated health insurance system — she is the mother of three children, one of whom was born with Gaucher disease, a rare metabolic disorder. As a former journalist who recognizes that communication is critical in healthcare, she works to drive better communication among medical professionals in order to achieve better outcomes for patients. She is the founder of Care Alliance Advocacy and provides professional patient advocacy services for children with rare diseases.
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?
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?
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?
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?
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?
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.
By making a few adjustments ahead of medical encounters you can be a better patient and partner with your healthcare providers, which can help you on your journey to healthier well-being:
1. Use your time wisely: Be prepared for your medical encounters by doing your research ahead of your appointment to ask informed questions. You don’t want to get home and suddenly remember something you wished you had asked, or maybe had forgotten to share information. Maximize your time with your providers with a list of questions. Preparation will give you the confidence to go into your appointment empowered and ready for a productive visit.
2. Speak up: If you don’t understand something, ask your doctor to explain it again. It is up to your healthcare provider to explain things in a way that is understandable and relevant to you. Misunderstandings and unclear communication present a barrier to your care so don’t be afraid of asking your practitioner to repeat themselves. Appropriate care comes from clear communication, and you need to feel confident you understand what your provider says and recommends.
3. Be Truthful: Honesty is the best policy — cliché, I know, but it’s true. Healthcare providers expect their patients to be truthful in order to provide them with appropriate care. But if you give your doctor inaccurate or misleading information, or withhold information, it can lead to potential adverse consequences. Be authentic and real with who you are. It is the foundation for building a trusting relationship with your provider.
4. Review your insurance: Your insurance plan dictates whom you can see for your care, and many plans have restrictions in place. Although it would be ideal to look into the future and know what you may need down the road, deciding on what providers and facilities you want will help you when reviewing insurance options. And since health insurance is a moving target, there is a good chance you will have to review your plan annually and adjust as needed.
5. Advocate for yourself: Or find someone to help you. I can’t overstate how important it is for consumers to be proactive in their care and advocate for themselves. Identify your needs, rights, and wants, and make a plan to make that happen for you.
If you could start a movement that would bring the most amount of wellness to the most amount of people, what would that be?
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?
1. Outsource — When I first started my practice, I had a very broad scope of services, however, I wasn’t fluent in every single service, which caused me a lot of anxiety — I thought I had to know everything within the business side of healthcare to be an effective advocate. By creating reliable partnerships with other advocates who are fluent in particular services I have been able to grow my practice and create a small community of advocacy professionals.
2. Find a mentor — While I was initially reluctant to find someone who could support me in a mentorship role, my perspective changed after finding the right person who challenged me and taught me things I may have never considered in advocacy. This led to professional growth in my practice.
3. Follow your gut — Trust your intuition for decisions and choices. Confidence in my gut has come with time and age. I realized it’s okay to not engage with individuals if I don’t feel like it will be a good relationship.
4. Don’t wait for opportunities — Whether it’s for business or problem-solving, advocacy takes chutzpah and hustle. I’m constantly thinking about how to create a new business or how I can resolve an issue with a provider or insurance company. Get into the habit of creating your own plans and solutions.
5. Always think long-term — I spend time each day brainstorming and strategizing about potential future scenarios and resolutions that can impact my business. Long-term thinking allows for flexibility and creativity in my thoughts as I imagine new workflows and think about goals, which gives me something to look forward to.
Sustainability, veganism, mental health and environmental changes are big topics at the moment. Which one of these causes is dearest to you, and why?
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?
Thank you for these fantastic insights!