Interview by Christina D Warner, writer for Thrive Global and upcoming author of the book, “The Art of Healthcare Innovation.” Check it out at christinadwarner.com.
As a part of my interview series with leaders in healthcare, I had the pleasure to interview Ilana Jacqueline. Ilana is a best-selling author, marketing consultant and professional patient advocate based out of Boca Raton, Florida. The 29-year-old patient who herself lives with a rare disease, works with biotech, healthcare, big pharma, marketing, advertising and venture capitalist firms to evaluate companies and products for their core values to patient audiences.
She works to create partnerships between non-profit health organizations and large corporations, provides companywide sensitivity training on rare, chronic, invisible and terminal illnesses and assists companies in creating powerful and engaging content for patients of all kinds. From CEO to customer service representative, Ilana delivers advice and resources on how to find the right words to leave patient-consumers feeling assured and knowing they’re in good hands.
Whether it’s creating focus groups of rare disease patients, developing support programs for caregivers, refining language and writing empowering material for improving quality of life — Ilana helps puts the human element back in healthcare. She currently sits on the board of three organizations including the Rare and Undiagnosed Disease Network, Invisible Disabilities Association, and the youth Health Advocacy Summit.
Her book “Surviving and Thriving with an Invisible Chronic Illness” is the end-all, be-all guidebook for patients living with incurable ailments who are continuing to pursue school, work, relationships, high self-esteem and independence while coping with unpredictable symptoms and continuous critical care.
Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?
I was born with a rare genetic disease, but I was someone who fell through the cracks diagnostically. It wasn’t until I was 19-years-old that I was diagnosed. In the quest to both diagnose my disease and then treat it — I encountered so many healthcare dilemmas. I dealt with insurance companies in the middle of a crisis and thought to myself, wouldn’t it be nice if healthcare workers really understood what’s happening on the other side of the telephone? I was so desperate to get better, my family and myself invested hundreds or thousands into concierge physicians and treatment centers that never panned out. I participated in a clinical trial — and never saw the results from the genetic sequencing I was told I’d receive for my participation. What it helped me to realize was that we, as patients, are extraordinarily vulnerable. We’re a desperate demographic who are ready and willing to empty our pockets, open our minds, and do whatever it takes to get better. It is now my job to clear the path for them by educating patients AND the companies that cater to them.
Can you share the most interesting story that happened to you since you began leading your company?
I had one client who, on my very first day was preparing to deliver a speech to a room full of parents of children with a rare, progressively muscular dystrophy. I asked to read over his speech to see what he planned to say. In his presentation he had planned on using phrases like “one day, I believe that each and every one of your children will be able to walk, run and play again.” I was flabbergasted and called the client with a word of warning that this was not a sentiment that would be well-received by parents of children who were well beyond that part of the disease journey. I also let him know that there would most likely be advocates there whose children had already passed. The goal is to empower patients and spread hope, but when you’re working with patients like this — hope looks vastly different than what it might appear as to someone with a healthy child and spreading false hope can be interpreted as cruel and misinformed. I gave my client a quick review of the realities of this disease and together we re-worked the speech with just hours to spare. It’s little minefields like this that can make or break trust with a patient audience.
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?
One of my first clients was a big life lesson for me about the value of my time. I was 18-years-old and hired to do some content for their blog, some social media engagement. Slowly my responsibilities began to increase and I didn’t speak up. I was getting paid a very modest monthly retainer and didn’t think to specify or evaluate the amount of hours the project would need. I literally ended up going from writing twitter statuses to an ENTIRE E-BOOK (which had to be produced within three weeks.) Now I set my rates and client expectations in writing and I speak up when expectations get out of hand.
What do you think makes your company stand out? Can you share a story?
Unlike a general marketing firm or business developer, I bring personal and continuous experience to the table. Terminology for diseases changes frequently and unless you’re deeply entrenched in these patient communities, you won’t know what those terms are, what causes offense or grief. My value comes with my authenticity. It doesn’t take a team to investigate whether or not a topic is being covered correctly — I live this experience and I can help make fast, effective decisions.