Twitter data indicate that patient-driven innovation in diabetes management has resulted in a patient population with type 1 diabetes who choose to build and share knowledge around a do-it-yourself (DIY) open source artificial pancreas system (OpenAPS). OpenAPS is an open and transparent effort to make safe and effective basic artificial pancreas system technology widely available to anyone with compatible medical devices who is willing to build their own system.

In a study published in the Journal of Diabetes Science and Technology, Michelle L. Litchman, PhD, FNP-BC, FAANP, and colleagues examined Twitter posts (with the hashtag #OpenAPS) to understand how patients, caregivers, and care partners perceive OpenAPS, the personal and emotional ramifications of using OpenAPS, and the influence of OpenAPS on daily life.“There is a distinct difference between diabetes management by a textbook and diabetes management in real life,” says Dr. Litchman. “We sought to understand how people with diabetes manage their condition in the real-world as it relates to OpenAPS.”

Upon analysis of more than 3,000 tweets, Dr. Litchman and colleagues found that OpenAPS changed lives, with five subthemes emerging from the data:

  1. OpenAPS use suggests self-reported A1C and glucose variability improvement.
  2. OpenAPS improved sense of diabetes burden and quality of life.
  3. OpenAPS was perceived as safe.
  4. Patient/caregiver–provider interaction related to OpenAPS was observed.
  5. Technology adaptation for user needs is actively occurring.

“There were multiple biophysical and psychosocial benefits noted related to OpenAPS use and no mentions of untoward effects or concerns beyond technology access and literacy,” says Dr. Litchman.

She stresses that healthcare providers caring for those with diabetes need to first be aware that patient-driven innovation, such as OpenAPS, exists. “Next, it is important to be open to having a dialogue about patient-driven innovation,” she adds. “Our findings suggest that if people with diabetes encounter unsupportive healthcare providers, they will go elsewhere. We are in an era in which technology is in the hands of many. I anticipate much more patient-driven innovation, in a variety of health conditions, to come.”

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