Introducing Phyllisa Deroze, Clinical Research Advocate

Science 37 welcomes Phyllisa Deroze to our Clinical Research Advocacy team. Learn about her passion for patient advocacy in the type 2 diabetes community.
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Tell us a little about your background:
I’m born and raised in Pompano Beach, Florida. I love traveling and have visited roughly 21 countries. I’m a professor of American literature and I occasionally enjoy writing poetry. I have a supportive husband and a beautiful toddler daughter. On February 15, 2011, I became the first person in my immediate family to be diagnosed with type 2 diabetes. At the time of my diagnosis, I was 31 years old and exercised at the gym five days a week. As a healthy young adult, I was misdiagnosed initially and the delay in my diagnosis nearly caused me to enter into a diabetic coma. By the time a co-worker drove me to the emergency room, I was unable to walk and needed a wheelchair. After six days in the hospital, I was discharged and began blogging at Diagnosed Not Defeated almost immediately. One of my first posts provided an explanation of the all the symptoms I had because I wanted my friends to be able to recognized them, in case they experienced the same thing in the future. Sixty-one days later, on April 16, 2011, I lost my home and everything in it in a tornado. Needless to say, that was a very dark time in my life and since then I’ve had to learn how to manage diabetes while rebuilding from scratch.

What led you to advocacy?
When I discovered that my near-death experience could have been avoided had I known the symptoms of hyperglycemia, it fueled me to educate others about diabetes symptoms. I don’t think anyone should lose their life or come close to it because they don’t know that frequent urination and extreme thirst are the indicators of elevated blood sugar. I’m an advocate because I want to help save lives. Advocacy means spreading knowledge and making people aware.

How do you do advocacy?
As an advocate, I think about creative ways to bring the message of diabetes awareness to people that I feel need it the most. It’s important that young people see a young person smiling and living their life with diabetes. I aim to bridge the gap between healthcare professionals and communities of color that are often given information that isn’t culturally competent. I host free workshops in African American and Arab communities where I share my experience of living with type 2 diabetes and empower attendees to live healthier lives.

Phyllisa Deroze, advocacy in action at her Diabetes Awareness Trivia Social on World Diabetes Day.

What is one thing you are most proud of as a result of your advocacy?
Last year, I hosted a workshop around diabetes awareness that was free and open to the public. An endocrinologist attended and when, as part of my closing, I asked if anyone wanted to speak about the workshop, she shared something very valuable. She said that the workshop gave her an opportunity to put herself in her patient’s shoes. She had been so focused on giving information to her patients and hadn’t put much thought into how it feels as a person to have to manage diabetes 24/7. She finished by saying that she would be more compassionate as a result of my workshop. This is a moment I am extremely proud of because by reaching one person, I know many will be positively impacted.  

What does patient engagement mean to you?
Patient engagement means going the extra mile as a patient to get involved. It’s what helps improve the healthcare system and medical industry. Patient engagement means being actively involved with reform in whatever capacity one can. That involvement ranges in various ways, such as asking your endocrinologist to refer you to a diabetes educator, asking if there are more cheaper alternatives to medications, learning about new medicines and devices, and inquiring about them with your endocrinologist. It can also mean asking to be referred to a support group, or starting one yourself.

What about patient-centricity?
Patient-centricity is the future that I dream about. When my needs as a patient are expressed and addressed and technological advancements are designed to address the needs I expressed.

What does science mean to you?
Science is mankind’s pursuit of understanding and discovery.

Who’s your favorite scientist?
Katherine Johnson. When I learned about her through the film, Hidden Figures, I was completely impressed with her. Not only was she a child prodigy, but she was the type of woman who took pride in her intellectual ability and displayed a character to be modeled.

What’s your favorite scientific discovery?
That DNA could be discovered in hair. My family is from the Gullah region in South Carolina and we have long since believed that a person can be traced to their hair. For example, I was taught to quickly and safely discard or burn strands of hair that were left in combs or brushes. I was taught that if a bird found my hair, I would get a headache or an enemy could use my hair to try and arm me. It was clear that my hair could be linked back to me. I remember being a kid cleaning up strands of hair and a neighbor asked what I was doing. I explained, and the kid thought it was a crazy idea to be so careful about strands of hair in a comb and that there was no way of connecting a hair back to me. As an adult when DNA discoveries were made, I thought about that encounter and how my culture has known that since the beginning of our time. It’s important to be reaffirmed culturally when Gullah people represent an extreme minority in American culture.

What’s the connection from science to medicine for you?
Science is about discovery and when science focuses on healing people with the means to live healthier and longer lives, then we have clinical research. Clinical research is valuable because it has an immediate impact on restoring a person’s health.

What is the most important issue to you regarding the future of scientific research?
Making the results of the research accessible and affordable. If a device or medication is manufactured as a result of a research study, it should be affordable to the people who need it.

If you could initiate clinical research into one thing what would it be?
My ideal research study at the moment would be to give continuous glucose monitors (CGMs) and other devices that allow continuous monitoring to people living with type 2 diabetes who want to know more about their body (regardless of their management regime) and see if they better manage their diabetes. Presently, insurance companies provide CGMs to type 1s most commonly, type 2s on insulin rarely, and type 2s not on insulin almost never. I am currently testing a CGM, and because I am not on insulin, my insurance will not cover it for me. As a person living with type 2 diabetes and not currently on insulin therapy, my access to these technologies isn’t covered by insurance companies.

How would you feel about being able to join a clinical trial and participate in research from your home?
I think participating in clinical trials can be a rewarding experience. As a college student, I once participated in a weight loss study. I was given certain foods to eat and access to the gym. I believed that by assisting in the study, I was helping scientists better understand what works best for weight loss and what doesn’t.

Do you have a favorite quote?
One of my favorite quotes is what my mother said to me as she comforted me when my team lost a Brain Bowl competition. The winners received a college scholarship for four years at the state university of their choice. When we lost, I believed my hopes and dreams of being the first person in my family to attend a university were crushed. My mother rubbed my back and wiped my watering eyes and said, “When God closes a door, He opens a window.” I have gone on to graduate from four universities and whenever hardship comes my way, I think about that quote.

Find Phyllisa on Twitter and on her blog.

This story has been edited for length and clarity.

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