Today we're chatting with another of our awesome winners of this year's Patient Voices Contest for our DiabetesMine Innovation Summit: Kathleen Peterson, a 29-year-old nanny and soon-to-be graduate student from Seattle, WA, who has lived with type 1 diabetes for 12 years. Kathleen is intimately familiar with the power of diabetes technology, having participated in a clinical trial for the Artificial Pancreas Project.
Kathleen shares with us her thoughts on the importance of device durability (including an oops! moment involving a music festival) and her personal goals for the upcoming Summit.
DM) Were you diagnosed in the "usual way" with extreme thirst and weight loss?
KP) Actually, I had a horrible infection on my fingernail for several weeks and I ended up having to go on antibiotics for it. About a month later, I had a another infection on my leg and I started drinking what seemed like gallons of water a day. I was on my high school's golf team at the time and was fairly active so I assumed it was because I just needed to rehydrate. After vomiting during a tournament, I realized that something was wrong. When I returned home from the tournament, I told my mom and dad about the infection on my leg and my mom immediately took me to the hospital and I was given antibiotics and told to see a doctor the next day.
I remember having to complete a urine test and when the doctor came in, he told me that he believed I had type 1 diabetes. I think I was in complete shock at that time. I had to go to a hospital that was about 1.5 hours away to be evaluated and treated. I remember at the time, the biggest concern I had was if I would still be able to leave in less than two months to live in Denmark as an exchange student, something I had looked forward to for such a long time. Thankfully, the doctor and the organization I had earned a scholarship with allowed me to go. It really took me a long time to come to terms with the idea that I would really be living with T1 forever.
"I think that simply making the video allowed me to come to the conclusion, after 12 years, that type 1 diabetes is a huge part of my life."
— Kathleen Peterson, on participating in the DiabetesMine Patient Voices Contest
Do you think of yourself as a patient advocate?
It wasn't until recently that I would have considered myself a patient advocate. While I have participated in the JDRF Walk to Cure Diabetes, have donated monetarily to type 1 diabetes research, and tried to educate people about T1 when possible, until fairly recently I was very passive about it. Entering the DiabetesMine Patient Voices Contest was a stretch for me because it meant that I had to admit to myself that this is a disease that greatly affects me. The research that is conducted by people that don't know me directly affects my standard of living. Being part of this contest allowed me to be proactive in being a patient advocate.
Tell us about your participation in the Artificial Pancreas Project trials.
I participated at the Benaroya Research Institute at Virginia Mason in Seattle, Washington, about a year and a half ago. I originally found the posting for volunteers on the JDRF website and was intrigued. Specifically, I was part of the project where they were testing the fuzzy logic controller; the term refers to the fact that a computer uses imprecise information to make a decision in various situations.
While this specific technology is common, they were testing it to see if it would be a viable option for use with an Artificial Pancreas device. When someone with diabetes decides how much insulin to take, they usually consider the current and previous glucose numbers, recent and anticipated food intake, and also activity level, thus using imprecise information to make a precise decision in regards to their insulin dosage. The goal of the study was to evaluate the safety of the fuzzy logic controller for use in an artificial pancreas system as it directly relates to regulating blood glucose in someone with T1. It also aimed to improve the fuzzy logic controller's accuracy and function.
What specific technology were you hooked up to?
I was connected to an Omnipod that was being controlled by a computer using the fuzzy logic controller to determine what insulin dosage I would be getting. In addition, I was connected to two continuous glucose monitors (CGMs) that monitored my blood glucose during the study. I also used a CGM for 24 hours prior to the study. My specific trial was aimed at testing the fuzzy logic controller within a "controlled setting," which in my case was a hospital room, with the ability to control my carb intake and have fairly accurate carb counts of my food.
Things went really well for me until my blood sugar dropped suddenly, even after the fuzzy logic controller discontinued giving me insulin for almost two hours. Unfortunately, they had to discontinue my trial (which was originally supposed to be 28 hours in a hospital setting). The researchers and doctor said the main thing they learned from my trial and one other trial before mine in this specific data set was that the algorithms that are being plugged into the device, that aim to keep one's blood sugar regulated, need to have the ability to change depending on different situations/variables. This includes sickness, activity, other health conditions, etc. I learned that this issue has been a major stumbling block for researchers working on Artificial Pancreas technology.
How did this AP experience influence you and your thoughts on diabetes innovation?
I had applied to be part of the project because I was going through a tough time in my journey with T1 and I needed a change of perspective. When I contacted the JDRF about the APP, I didn't realize how much the experience would affect me emotionally.
Also, it was eye-opening for me to be able to be part of the research, and have the doctors and researchers tell me a little bit about the history of their clinical trials and what future trials will look like. I gained a better understanding of the necessity of further research to ensure that the technology is safe and effective. Being able to meet one of the doctors, a nurse, and two of the engineers that were part of the project was equally eye-opening, as it made me realize there are people out there who are passionate about ensuring that my quality of life as a person with diabetes is continually improving. In addition, it provided me an opportunity to learn more about the FDA regulation process of medical devices. It showed me that there is useful technology that goes underutilized in this field due to tight regulatory standards.
What inspired you to focus on wireless connectivity between CGMs, pumps, etc. and consumer devices in your winning video?
I am a busy person and I want to be more proactive, rather than reactive, with my diabetes care. I know that one of the things that I use more than anything is my phone and I would love to be able to carry one less thing around on a day-to-day basis to handle diabetes. Having more wireless connectivity between already existing consumer devices as well as the devices we selectively use to control our diabetes would allow us to utilize those numbers in real time. I believe it would also ensure that we're able to effectively communicate with those on our diabetes care team to enable them to analyze the numbers in a more organized manner.
In the video you mentioned device durability... care to share any stories?
This year on Memorial Day weekend, I attended the Sasquatch Music Festival. I often wear my pump in my bra and have never had an issue, but after wearing it in 90-degree heat for the day, I pulled it out in the evening to find that my pump had huge cracks all around the casing, there was a part of the pump that had started to fall out due to the cracking, and my screen had moisture inside of it. I was astonished that this happened until I started doing some research online. It turns out that this isn't abnormal for those who wear their pumps in bras. Thankfully, my warranty covered this incident.
What are you most excited about going in to the DiabetesMine Innovation Summit?
I am most excited about being able to have my voice heard. I find that I often feel insignificant in the world of healthcare and that it would just be nice to let those who are the innovators know what is most important to me. I also look forward to meeting others who have diabetes. I know that there is such an amazing community of people out there who have been through many of the things that I have and it is nice to be able to commiserate as well as problem-solve with those who know what it's like to live with diabetes.
What do you hope to bring to the Summit yourself?
I hope to bring an upbeat and open attitude to the Summit. I have so many ideas for improvement as well as new ideas that could help millions of people regulate their blood sugars more effectively as well as help them communicate and share their important medical information with their diabetes care team. I hope to bring a new perspective on technology and integration that can promote new innovations in the diabetes field. I think it is important for those who aim to develop diabetes devices and products to have a "face" that goes with what they are making; it's important that they understand that we all have differing viewpoints, wants, and needs in what we are looking for when we search for a particular product or device.
How do you think this might affect your own life with diabetes going forward?
I think that simply making the video allowed me to come to the conclusion, after 12 years, that type 1 diabetes is a huge part of my life. It affects me in so many ways that can be very difficult. That said, it also has made me a more compassionate and stronger person in numerous ways. Being able to simply share my perspective and being heard by the innovators that aim to make my diabetes management a little easier, is incredibly rewarding in itself. In addition, I believe it will make me more mindful of times when I can be a better patient advocate and educate those around be about diabetes and diabetes management.
Thanks, Kathleen, we're so glad to have you on board!