In 2010 Nicole Johnson secured funding for a five-year innovative project being conducted at the University of South Florida called "Bringing Science Home." Johnson serves as the project's Executive Director.
I first met Nicole last year when she was the key speaker at Diabetes Sisters' "Weekend for Women." I was then, and continue to be, impressed by her passion for better serving people with chronic illness.
This is the sixth in my series of profiles on diabetes change leaders.
Q: Tell me about the project you're heading, "Bringing Science Home?"
Nicole Johnson: First, it's a dream come true for me. It's a four-year funded project where we're looking at how we can provide the support and tools people who live with a chronic illness really want and need. That means educating patients, families and health students differently.
For instance, right now most care is patient-driven. But that only shows us part of the picture. It doesn't consider the different circles of people who surround the patient, like their family who are so important to how well a patient does.
We're also looking at how to train medical students so they better understand the experience of living with chronic illness and can better care for patients.
Q: What drew you to advocate for and lead this project?
NJ: Frankly, my personal experience living with diabetes and the need that I've been seeing for so long. I feel almost like an honorary family member of so many people in the diabetes community. I've been listening and learning about family needs, family crisis and the gaps in care for the past 17 years. Patients are under-served.
Also I look at my five-year old daughter and wonder, if she gets diabetes one day, will she have what she needs to help her? I would desperately want her to have access to peer groups that look and feel like her and information that's relevant to her everyday life, not just what an organization thinks is important for diabetes education. The way we teach diabetes education right now is tailored around the reimbursement structure and that doesn't necessarily create the best outcomes.
Q: What are you discovering and what have you implemented so far?
NJ: We're eight months into the project and we're seeing what the needs are throughout one's life when you live with chronic illness. Most everything we do starts with type 1 diabetes, partly because of my experience living with it, but it doesn't end there. We're looking for elements that are transferable between all different kinds of chronic, lifelong conditions, including type 2 diabetes and others like asthma, arthritis, Alzheimer's, cystic fibrosis, the list goes on and on.
We have six research projects underway. Right now we're rolling out a program on college campuses. It's not a support group, but an opportunity for students with diabetes to connect and develop a safety net. Teens need help transitioning from being dependent on their family to being independent adults.
We've also designed a program where first year medical students spend time with patients and their family in the home environment. They'll visit with that family for two or three years and we expect end up with a much richer perspective from the very start of their training. That's why we called the project "Bringing Science Home," because it bridges the gap between clinicians, the patient and the home environment.
We're also discovering what needs parents of children with diabetes have. Parents hardly ever think about their own needs in relation to their child's needs and that's dangerous for the well being of the whole family.
Q: You're getting your Doctor of Public Health Degree now at the University of South Florida. What do you plan to do with it?
NJ: I'm doing it! You know we have great clinical services, but medical students aren't taught how to handle conditions that are not immediately solvable. They are taught to seek answers, so they don't really have the tools for treating someone with a chronic illness.
Then too we have wonderful non-profit organizations that fundraise and support research, but their emphasis is cause-related, not people-related. As a grown woman with diabetes I can say I'm not getting enough of what I need for my everyday life. I'm trying to fill that void of where the heart is in all this.
Q: What findings and additional tools do you expect you'll have when you bring this study to a close?
NJ: I think in the next four years we'll develop a new template for educating health students. Instead of focusing on labs and written materials they'll get a psycho-social experience. They'll really see the life of a person with disease and the impact of those who surround him. That will be a strong outcome. So much of our health is based on how a family functions and the support they feel and give each other. For instance, we know that how well a child does with diabetes correlates with how supported the mother feels in the family.
We'll also have tools to help parents of children with diabetes. Parents take the brunt of this disease onto their shoulders and live with a tremendous amount of grief and anxiety about the future.
My long-lasting goal for this project is that through what we learn we can rewrite the guidelines and the methods for how diabetes education is delivered and seek policy change. We need to empower health care providers to be able to use different techniques with patients, not just those that fit within reimbursement models.
Q: The press release for "Bringing Science Home" says the project investigates the connection between chronic disease, family dynamics and optimistic living. How do you define 'optimistic living?'
NJ: It's such a cliché but it's the old adage of is the glass half full or half empty? Are you a victim or a victor? Optimistic living is a positive perspective one learns to have living with disease. I think we can teach people to have a more optimistic perspective. This goes back to realizing the influence of the family on a patient. So much of how we feel is drawn from who is in our house, how are they responding to us and what are we feeling from them about this disease we have to cope with on so many levels.
Q: So you think you can teach someone to be optimistic?
NJ: We don't know right now but we're investigating that. Does an optimistic outlook come from how you're educated? The support you receive? The relationships you develop? By having social services for teens and college students with diabetes, does that provide a defense mechanism where depression often appears? Those are questions we're asking.
Q: Are you naturally optimistic?
NJ: In the past I had to work very hard at it, but it comes more easily now. When I got diabetes as a young woman I was depressed. I was even at one point thinking about ending my life. The pain was just too much to handle and I felt so unsupported and alone. This is going to sound strange, but when I started participating in the Miss America program, the competitive element brought me out of my despair and gave me something to work toward.
I began wanting to push the envelope a bit. I actually went against my doctor's advice who told me not to participate in the pageant, but I wanted to see if I could do it. That helped me realize that life was still possible, and then small victories began adding up and empowering me to think in a more positive way.
Q: Do you still have to work at being optimistic?
NJ: Every day. I make a deal with myself, a decision to have a good day with diabetes. It's a very conscious thing for me. Also, I chose to be around positive, not negative, people. That's helpful for life in general and also for my diabetes. Plus I'm such a stubborn Southern woman I always want to keep trying so I'm not easily defeated by this disease. When diabetes doesn't go right, like my blood sugar's crazy, I look at my daughter and I start making commitments from there.
Q: What prompted you to enter a beauty pageant?
NJ: To have a microphone. I never aspired to be Miss America. I was studying journalism and my goal was to be on national television and talk about diabetes. You know during my reign I didn't wear the crown. Some people weren't so happy about that but I wanted people to hear what I was saying, not be captured by the sparkle of the crown. The real purpose of being Miss America to me was to let others with diabetes see that they could do anything. If a girl with diabetes got chosen as Miss America they could do anything.
Q: Does having diabetes and wearing an insulin pump make you reassess the notion of beauty?
NJ: I've always felt that true beauty is in the spirit of a person. It's not make up or clothes or hair but how an individual communicates and connects with others. If you have passion, if you're real, if you are appreciative, these are beautiful, spiritual qualities.
I know my perspective on life is richer because of the challenges I've lived through. Struggle matures your heart and I know my heart and spirit are so much more tender. That's part of what "Bringing Science Home" is trying to help people realize, that through challenge and struggle also comes opportunity and choices that can enrich us. It's natural to grieve when we're hurt but when we come out of grieving we can come out stronger.
Q: As the Executive Director of "Bringing Science Home" do you ever hear people say, "Who does she think she is, she's just a beauty queen!?"
NJ: Every day! Almost daily I encounter someone who makes a joke or flippant remark like, "Oh, she's just a beauty queen!." Trust me it's an uphill battle. But I know this work is important. All I have to do is look at my own parents and see they're still hurting because their child has a disease.
Q: You travel a lot speaking to patients at health events, what do you see is the biggest obstacle for most people?
NJ: I think it's the love/hate relationship with food. People see food as the enemy and think because they have diabetes they have to deprive themselves. People also have a hard time getting over a string of difficult days with diabetes and then they often get trapped in negativity.
Q: What's the hardest thing for you about living with diabetes?
NJ: The first thing that comes to mind is I live alone with a child and when my blood sugar drops too low my daughter sees that. I feel helpless in that moment what impact that may have on her. In the long run I have no doubt the impact will be positive, but in that moment the look of concern on her face is devastating.
Q: Has diabetes brought you something good?
NJ: I'd say I'm healthier than the average person and very tuned in to what's happening with my body. Diabetes gives me the discipline to stay healthy. It's also brought me a deep love for people and amazing, beautiful relationships. I'm not sure I'd have that without the bond and intimacy of this disease.
Q: What's your next step when this project is finished?
NJ: I'm not sure. I've never been one to chart out a five-year plan. I go with opportunities as I encounter them, keeping my eyes and ears open. Right now I love what we're doing developing a cognitive behavioral study program, new technologies and an innovative clinical structure for better communication with patients and their families, and different educational tools for nurses, public health, medical and pharmacy students.
What I do know is filling the void between clinical services, and where the heart is and what it needs, that's my life's mission.
America's population of people who live with a chronic illness is increasing at an explosive rate. Back in 2005, 133 million Americans -- almost 1 out of every 2 adults -- had at least one chronic illness and that number is only growing as people live longer.
I would love to hear from patients, health care providers and health students what you think of Nicole's initiative, what it could contribute to patients' outcomes and what you think we need to better serve patients managing a chronic illness?
Credit: The photograph of Nicole and her daughter Ava was taken by Kristi Stiff.
Riva is the author of 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It and The ABC's Of Loving Yourself With Diabetes. For more information, visit diabetesstories.com.