On Inspire.com, a woman discusses her quest to remedy her own symptoms of psoriasis. “In my search for a livable solution to my very severe psoriasis,” she says, “I have begun searching for ‘cause and effect’ instead of the ever more popular ‘symptom treatment’ that I have personally participated in with disastrous results for the past 45 years.” Her self-discovered solution includes a combination of using slippery elm, limiting fats and gluten, taking probiotics, and soaking in water. As she says, “Something is working.”
This is an example of a self-imposed “N of 1 experiment”. Such experiments can be highly effective, but they can also be misguided. Without a methodical approach, it’s difficult to know exactly what is actually working. Without the supervision of a doctor, some can be dangerous. Nevertheless, patients continue to perform N of 1 experiments – sometimes they don’t even realize they’re doing it – and the traditional medical community is often slow to step in.
C3N, based out of Cincinnati Children’s Hospital Medical Center, shifts that paradigm by lending the needed support and creating an N of 1 prototype program, designed to assist pediatric patients with IBD. Patients and clinicians work together to design experiments, “to develop data collection tools, protocols and reports that physicians and patients can use to provide highly specific, personalized answers to questions that will help decide which combination of treatments and lifestyle modifications work best for the patient.” By providing a controlled environment for patients to experiment, C3N supports patient activation and encourages self-directed care, while allowing doctors to improve the quality of the clinical experience in and out of the doctor’s office.
Lybba is helping C3N take the project online. The C3N platform will provide a network where patients interact with each other and their clinician care team to track N of 1 experiments and monitor symptoms. They’ll determine what works and what doesn’t. The system also provides a support mechanism for parents and a quick easy way for researchers and clinicians to get the data they need to make quality improvement decisions in relation to the care of their patients.
Consider Orleans, a 13-year-old girl with ulcerative colitis, whose father recently discovered that his daughter seems to get worse whenever they run out of yogurt for a few days. He’s heard of probiotics as an alternative treatment for some symptoms of IBD and wonders if there is a correlation. He desperately wants to help Orleans feel better, but he doesn’t want to play around with his daughter’s health. There isn’t much time in a 15-minute visit to fully investigate the possibilities with Orleans’ doctor, but the C3N platform provides a mechanism with the N of 1 prototype where her family can work with her physician to create an experiment and track the results day to day.
Lybba’s design team has defined Orleans and the above scenario as part of a persona modeling methodology for the C3N platform, based on months of research and interviews with actual pediatric IBD patients, their parents, and clinicians. The goal is for patients like Orleans and her family to have a safe and effective place to conduct N of 1 experiments, while clinicians remain constantly apprised of their status, via an automatic, streamlined, and simple process.
Features of the network include basic health surveys and journal entries, which patients can choose to share with their friends and family, or just with their doctor. Doctors will be able to retrieve the vital data about how all of their patients are doing as a test group and how each is feeling on a daily basis over time. Patients will also have access to the progress of their fellow patients, so they can benefit from approaches that are working for others. In sum, the C3N platform brings together patients, parents, clinicians, and researchers to collaborate with one another, and the vision is that C3N will be applied to even more disease states, contributing to quality improvement of healthcare and individual health over time.