Raise your hand if you’ve ever been blindsided by an IBD flare. My Crohn’s has landed me in the hospital with zero warning on several occasions. The unpredictability of IBD is a huge challenge we all face. But what if a wearable device could signal when our disease course is going off the tracks? What if we had warnings long before we were face to face with our next flare?
An ongoing “Stress in Crohn’s” study out of Mt. Sinai’s IBD Center in New York and The John Radcliffe Infirmary/Oxford University in the United Kingdom has been investigating this since February 2021, with the help of 200 participants. The study wrapped up in June 2022 and was conducted in partnership with 4YouandMe and funded by a grant from The Leona M. and Harry B. Helmsley Charitable Trust to 4YouandMe.
The goal? To empower those with Crohn’s to monitor stress responses and early signs of impending illness worsening in between clinic visits, while providing a means to navigate life and mitigate the consequences stress has on our disease journey. While stress has long been known to somehow affect our IBD, the details of the relationship are poorly understood.
This week on Lights, Camera, Crohn’s we hear from an IBD mom and educator who recently participated in the Stress in Crohn’s study in hopes of taking action to help advance our knowledge of diseases like Crohn’s and ulcerative colitis.
The mission of the Stress in Crohn’s study
Wearables such as smart rings, smart watches, and smart scales, along with our phones, can collect information emanating from us. They can record our physiology and our routines that we are learning to weave together into “clinical symptoms”- such as fatigue, sleep, and stress.
“The main mission of 4YouandMe (nonprofit) is to empower individuals to navigate their own health by using wearables and apps while sharing their own health related data and insights for the benefit of all. This desire was birthed after working at Apple on their Special Projects team and grew out of asking “why can’t the data that emanates from each of us come back and help each person improve their health on a daily basis”,” said Stephen Friend, President 4YouandMe(nonprofit) , Visiting Professor of Connected Medicine, Oxford University.
Tina Aswani-Omprakash, MPH, Wearables Research Coordinator at Mount Sinai’s Susan & Leonard Feinstein IBD Center & Patient Advocate/Founder of the blog ‘Own Your Crohn’s’ says the promise of wearable devices in the prediction of IBD flares and drug response is real and something she’s excited about.
“As we know, IBD can be a progressive disease and it is important to shut down inflammation quickly to prevent complications. The wearable studies at Mount Sinai’s Susan & Leonard Feinstein IBD Center are looking to develop algorithms using measures such as heart rate variability, sleep duration & quality, essentially autonomic/ parasympathetic nervous system fluctuations via data collected through wearable devices. The hope is to help predict IBD flares and showcase drug response utilizing wearable device signatures,” said Tina.
Meet Nicole, Stress in Crohn’s study participant
Nicole Pavlin became a patient at the Mount Sinai IBD Center in New York and received an official diagnosis of Crohn’s disease of the ileum and jejunum in 2021, but her symptoms began more than 16 years prior. At the time Nicole was just beginning her teaching career and she was focused on raising her family. Once Nicole received her IBD diagnosis, she would often search GI research publications to better understand Crohn’s, along with the treatments and procedures available to patients.
“By educating myself about the disease, I’ve been able to communicate more efficiently with my healthcare team and advocate for my needs. The opportunity to participate in IBD research is always exciting to me, especially since the results could potentially help patients in the future,” said Nicole.
Nicole chose to participate in the “Stress in Crohn’s Study” from July 2021 to May 2022, which captured a period of time when her IBD symptoms took a turn for the worse. Nicole had bowel resection surgery that involved the removal of 6 inches of her ileum, including her Meckel’s diverticulum.
Getting recruited for the Stress in Crohn’s study
You may be wondering how Nicole got involved with this study. A Clinical Research Coordinator from the Mt. Sinai IBD Center reached out to Nicole to see if she’d be interested in participating. The researcher told her digital devices were being used to learn the relationship between Crohn’s disease symptoms and stress to try and predict the onset of flares.
“I was given detailed information about the study and instructions on downloading the app. The researchers provided me with an Oura ring, an Empatica EMBRACE wristband, and a Bodyport scale. I completed various surveys and tasks within the Stress Study app each day. Whenever I had a bowel movement, I would note the characteristics of the stool on the Pooply app based on the Bristol stool scale. The Rescue Time app was optional, and I chose not to use that one,” Nicole explained.
Daily points were awarded for wearing the Oura ring and Empatica wristband, using the Bodyport scale, answering survey questions, and completing tasks on the study app. Nicole received extra “boost points” for using the devices multiple days in a row.
“Every two weeks I gained points for completing a video diary and a cognition task. About five times during the study, I completed a Calprotectin stool sample at home through the IBDoc app. I had a support team and check-in calls each month to answer questions about my mental health and medications. There was also a study visit every three months to complete additional surveys about my health and Crohn’s disease.”
By the end of the study, Nicole earned more than 20,000 points for completing these tasks and eventually received 5 stars for being a “Groundbreaking Contributor” to science. She says the point system was a big motivator and a fun challenge. The study lasted 9 months. Nicole was compensated $400, and she got to keep the Oura ring.
Wearables provide a “new voice of objective data”
Up till now, those with chronic diseases have had to use their memory and feelings to convey their diseases. The wearables offer a new voice of objective data for themselves and for their physicians about what precisely occurred.
“In this study of Crohn’s disease, we were more interested in unlocking the link between stress and flares in Crohn’s. This is part of a larger set of feasibility studies to build for individuals a “Stress Load Navigator” for we note a tight connection between not just inflammatory bowel disease, but also diseases as diverse as diabetes, heart attacks, arthritis and even Alzheimer’s,” said Dr. Friend.
Marco Altini, Founder of HRV4Training, advisor at Oura, and Guest Lecturer at VU Amsterdam, says recent advancements in wearable technology are making it possible to move away from the lab and monitor our physiology continuously, in real life, when and where it really matters.
“In the context of many chronic conditions, the ability to monitor our own, individual changes in resting physiology over long periods of time, and in relation to symptoms or other makers, could finally help us better manage our health,” said Marco.Devices such as the Oura ring can monitor accurately resting heart rate and heart rate variability over time. These signals are tightly coupled to our stress response, which is often an important part of the picture when managing our health.
Participating in research as an IBD mom
Since there is a genetic component to IBD, Nicole says she worries that her children could show signs of the disease in the future. She’s been very open with her children about the challenges she’s faced with the disease.
“I want to model resilience for them so they can see how to navigate difficult situations. By participating in research, I want to show them that we have a chance to use these challenges to help others and make a difference in the future.”
Nicole says it’s encouraging that wearable devices could potentially predict the onset of flares, which might offer faster treatment to prevent the escalation of inflammation and disease progression.
The importance of contributing to IBD research
Nicole’s hope is that by sharing her experience, it will inspire others to participate in IBD research and encourage more funding for these types of initiatives.
“Our research contributions as chronic illness patients have so much potential to benefit others in the future. This study was fascinating, and it was truly a pleasure to participate in the research.”
She says by taking the daily surveys and performing the tasks, it made her feel like someone was paying attention to her struggles.
“It gave me an incentive to be strong, thinking that my challenges could be helpful to IBD research!”
Nicole’s final thoughts on wearable devices
- Wearable devices present a great opportunity for patients to monitor their health and provide feedback to healthcare professionals. “Since the study, I’ve continued to wear the Oura ring, and it’s been especially helpful to follow my progress as I rebuild and strengthen my body. Each morning I can check my readiness level to see how my heart has recovered from various activity levels. My sleep analysis has also been helpful for establishing a healthy sleep routine.”
- The Oura ring has captured periods of strain on my body, and I can often tell when I’m getting sick with slight elevations in body temperature and resting heart rate. “During my Covid infection, the ring app even showed a fever spike along with elevated heart rate. I’ve also been able to monitor episodes of tachycardia with the help of the Oura ring and a KardiaMobile device, which is a single-lead portable EKG connected to a phone app. In addition, we have a pulse oximeter at home to monitor heart rate and oxygen saturation.”
- With so much information to collect on our health, these devices can be overwhelming and anxiety provoking. “During the study, I was constantly monitoring my symptoms which led to a hyperfocus on my disease. Weighing myself each day also contributed to anxiety. Each time my weight dropped a little bit, I got worried and discouraged. The constant focus on weight can also contribute to issues with body image, and I’ve since decided to just weigh myself at medical appointments. For anyone considering wearable devices, it’s very important to keep moderation in mind.”
When we step out into the world, we need navigation tools. The same goes with wearable technologies. Soon, we’ll be able to use the data taken directly from our own bodies, during our day-to-day lives, to follow what is happening and help us to better navigate our own health paths. According to Dr. Friend, last year almost half of American adults were wearing some form of smart watch, and as of Spring 2022 more than 90% of smart watch users state they use health related apps to follow their health.
Interested in becoming a citizen scientist like Nicole? Learn about additional research opportunities:
Wearable devices:
Current IBD Forecast research (ehive studies)
Other Opportunities:
Contact a Clinical Research Coordinator at a Hospital, University, or IBD Center
Patient-Centered Outcomes Research Institute (PCORI)
In the future, Nicole plans to contribute to the Mount Sinai Million Health Discoveries Program which aims to understand how to treat different diseases in patients of all races, ages, and genders. She has also been invited to collaborate with Nutritional Therapy for IBD whose mission is to improve the lives and outcomes of patients with Crohn’s disease and ulcerative colitis through evidence-based nutrition.
Closing thoughts
The information collected from wearables can be a gamechanger for us as patients. Many of us call our doctors or go to the ER based on symptoms, but if we have remote monitoring via such devices, we could perhaps prevent this disease from spiraling. Kudos to Nicole and the many other research participants who are helping to push the needle and change the future of what it means to live with IBD.
“To me, that’s not just hope. That’s the future of managing this disease better and truly owning our Crohn’s or ulcerative colitis,” said Tina.
Connect with Nicole on Instagram: @nicolepavlin2
Connect with Tina on Instagram: @ownyourcrohns
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