The Kenneth Rainin Foundation’s mission is simply to enhance life. They accomplish this in three different areas of focus: Arts, Education, and Health. Through these lenses, they support open-minded innovation, moving from problem identification to real action plans. Under their Health lens, the foundation conducts a yearly Innovations Symposium. This year, I was lucky to attend the 2018 Innovations Symposium in San Francisco, CA. For two days, talented people from a multitude of backgrounds presented research, created connections and collaborations and discussed various topics surrounding Inflammatory Bowel Disease (IBD).
The tone of the meeting sets this one apart from many others that I have attended. Every single person I met was deeply committed to improving the lives of all those affected by IBD. I was puzzled as to what brought these folks together until I met Jen Rainin. She brings a rare combination of pure humility and avid curiosity to her work at the Kenneth Rainin Foundation. The organization has given $20 million to IBD research in the hopes of helping researchers move towards enlightened plans of action.
Although every person I met at the conference was fascinating, three stood out as outstanding examples of translating problem identification to actionable plans for IBD.
Meet the innovators (and their innovations):
David Suskind, MD
Dr. Suskind is a pediatric gastroenterologist, is Professor of Pediatrics at Seattle Children’s Hospital and the University of Washington School of Medicine. In addition to his clinical practice, Dr. Suskind is an avid researcher seeking new ways to treat IBD and other gut diseases. His clinical research has shown support for dietary therapies in patients with IBD.[i] He and his team have shown changes in the microbial populations in IBD patients’ guts after diet therapy.[ii] Microbiome dysbiosis in the gut is defined as having decreased species diversity. You can see in this graph that after 12 weeks of diet therapy, certain patients have increased microbial diversity.
The PRODUCE study, a collaboration between Seattle Children’s and Cincinnati Children’s Hospital, is expanding upon Dr. Suskind’s initial studies and is the first large-scale multicenter study on the use of the SCD (specific carbohydrate diet) as an effective treatment for IBD in children.[iii] The PRODUCE study compares a strict SCD to a modified SCD diet in decreasing symptoms and reducing inflammation in IBD subjects. Dr. Suskind is also the founder of NiMBAL, a free website whose mission is to educate and help support families, patients and healthcare providers in incorporating dietary therapy to treat IBD.
Steve Axelrod, Ph.D.,
Dr. Axelrod got his training in Elementary Particle Physics at Yale, and then Stanford where he completed his postdoc in the same field. He worked for 15 years at Measurex-Honeywell, where he became the Director of Measurement Systems and Hardware Engineering, developing complex measurement products like nuclear and X-ray sensors, before transitioning to the medical device field.
Motivated by a daughter who was diagnosed with Crohn’s Disease at 13, he applied his knowledge of the medical device field and his background in physics to create a novel product– necessity is the mother of invention. The result is a small abdominal patch called the G-Tech Patch System [iv] that harnesses the latest mobile, cloud, and materials technologies to help sense and determine digestive function.
G-tech is like an EKG for one’s gut
Started in 2011, G-Tech offers wireless, wearable patches, that easily conform to the body and run continuously for three days as the patient goes about their normal daily activities. The non-invasive patches read the electrical signals from the GI tract, generated by the muscles of the stomach, small intestine, and colon, acting very much like an EKG for one’s gut.
The patient wears the patches which transmit the signals via Bluetooth to a smartphone app, which in turn uploads it to the cloud. This data is then processed with proprietary algorithms, developed by combining math, physics, cellular biology, and an understanding of the digestive tract, to provide a report for the physician to help diagnose the underlying cause of a patient’s symptoms.
G-Tech’s studies have taught them that each person has a unique “gut-print”, that emerges over 24 hours of recording data. They refer to this period as a “gutbeat” in analogy with the heartbeat. This novel product can help personalize medicine and translate data into specific care for individual patients.
Although it is still in the prototype stage, G-Tech has already presented 12 posters, created 2 medical journal manuscripts, and with the help of the Rainin Foundation, has turned 15 million data points of raw signal into something with meaning.
Laurie Keefer, Ph.D.
Dr. Keefer is a GI Health Psychologist and the Director of Psychobehavioral Research at the Icahn School of Medicine at Mount Sinai in New York City, NY. She takes a psychological and behavioral approach to gut diseases, such as IBD, and is a pioneer in providing behavioral therapies to improve gut health for patients [v].
In her current role, Dr. Keefer oversees Psychobehavioral Research for the Division of Gastroenterology and also Co-Directs a patient-centered subspecialty medical home within the Susan and Leonard Feinstein IBD Clinical Center called GRITT-IBD [Gaining Resilience Through Transitions-] which focuses on reducing negative outcomes for patients with IBD by enhancing their resilience with behavioral tools. She remains committed to the development of self-management tools that leverage the strong connection between the brain and the gut to improve outcomes for patients with chronic digestive diseases.
Harnessing positive psychology and Cognitive Behavioral Therapy (CBT), she focuses on resilience, optimism, and social support, to help patients find the ability to self-regulate their wellbeing, happiness, and engagement in life. Dr. Keefer came up with the GRITT scoring system which uses resilience instead of stress as an endpoint.
Current models are reactive, not proactive
Dr. Keefer explained to me, “Current models of psychosocial support in GI practices have been reactive and not proactive.” She, therefore, sought a different path, by utilizing the power of positive psychology to turn the focus away from the negative (stress) to a positive (resilience). Her GRITT scoring system is built around gaining resilience through transition. There are many transitions throughout life: from sick to healthy, from pediatric to adult care, from an old job to a new one etc. By focussing on resilience, you can capture the patient’s strengths in addition to risks and vulnerabilities. In application, measurable variables are tracked with the goal of optimization. A care plan is devised, which has multiple extenders: peer mentoring, telemedicine, pain management, patient advisory board, etc.
She also uses hypnotherapy to address resilience and help IBD patients. In a study that was conducted, she found that patients that received the hypnotherapy were in remission for 78 days longer. She also found that the risk of a flare was two times higher in the control group. NBC News broadcast a video segment on Dr. Keefer and her use of hypnosis for IBD. In addition to her research and therapy, she serves as a team member/advisor for two entrepreneurial companies, GastroGirl and MetaMe health.
One thing that connects these three individuals is that their commitment and passion for their practice and research has resulted in outstanding and innovative products, ideas, and therapies, moving us all forward. With the support of Jen Rainin at the Rainin Foundation and all wonderful innovators, the hopeful future of IBD is happening now.
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[i] Lane, ER, Lee, D, Suskind, DL. “Dietary Therapies in Pediatric Inflammatory Bowel Disease: An Evolving Inflammatory Bowel Disease Paradigm.” Gastroenterology clinics of North America.” Vol 46(4). 2017. 731-744. https://www.ncbi.nlm.nih.gov/pubmed/29173518
[ii] Suskind, David et al. “Clinical and Fecal Microbial Changes With Diet Therapy in Active Inflammatory Bowel Disease. Journal of Clinical Gastroenterology. Vol 52(2). 2018.
[v] Ballou, Sarah, Keefer, Laurie. “Psychological Interventions for Irritable Bowel Syndrome and Inflammatory Bowel Diseases.” Clinical and Translational Gastroenterology. Vol 8(e214). 2017. https://www.nature.com/articles/ctg20166
Ellen Martin and Becca Maliza were also authors on this story. Click the link to read about them here.