DIY Artificial Pancreas Users Tweet it 'Changes Lives'

Miriam E. Tucker

September 13, 2018

A patient-driven, do-it-yourself, open-source artificial pancreas system (OpenAPS) appears to safely improve glycemic control and quality of life among patients with type 1 diabetes, at least according to information gathered from Twitter.

Findings from a 2-year qualitative "netnography" analysis of more than 3000 tweets carrying the hashtag #OpenAPS were published online September 10 in the Journal of Diabetes Science and Technology by Michelle Litchman, PhD, APRN, assistant professor at the College of Nursing, University of Utah Health, Salt Lake City, and colleagues

The OpenAPS movement was launched in 2015, when individuals in the type 1 diabetes community had become impatient with industry's attempts to develop an artificial pancreas. They hacked into older insulin pumps and current continuous glucose monitors (CGMs) and developed open-source code to allow the two devices to communicate, or "loop", for semi-automated insulin delivery. They tweeted their progress using the hashtag #WeAreNotWaiting.

This happened more than 2 years before the US Food and Drug Administration (FDA) approved the first hybrid closed-loop insulin delivery system, the Medtronic MiniMed 670G.

Today more than 750 people are believed to be using self-built artificial pancreas systems worldwide, despite the fact that they're not approved by regulatory bodies including the FDA.

"There is a large community that is actively exploring how they can manage their diabetes using off-label solutions...Healthcare providers, industry, and the FDA need to understand the wants and needs of people with diabetes in order to better serve them. OpenAPS was created out of a need for better solutions," Litchman said in a statement from her institution.

One endocrinologist who uses the OpenAPS system himself says it's not perfect but this new published study is a starting point to better track the progress of those who are using the "grassroots" technology. And physicians, he says, should be open-minded about it.

You Can't Hang Your Hat on a Twitter Study

Information gleaned from the hashtag tweets suggests that OpenAPS reduces HbA1c, glycemic variability, and daily diabetes burden, and that users perceive it as safe. Other tweet themes were about interactions with healthcare providers concerning OpenAPS and how to adapt the technology to individual user needs.

The authors advise that clinicians "may want to consider becoming more informed about OpenAPS and other patient-driven innovations to support positive patient–provider interactions."

Asked to comment, endocrinologist Jeremy Hodson Pettus, MD, of the University of California, San Diego, told Medscape Medical News, "I think this whole do-it-yourself pancreas movement is very important. There are people using it and it's making a huge difference in their lives. I think it's important for more people to know about it, and hopefully it will become more mainstream and more available."

Regarding the new data, Pettus, who wears an OpenAPS system himself, noted, "It's not the most scientifically vigorous study. There are several biases, as those who tweet about it may not be representative...I tend to personally agree with the findings that the system has a real benefit, but I don't think you can hang your hat on a Twitter-based study."

Rather, Pettus says, the article will "get the word out and hopefully get more studies to follow it. Specifically, we need more controlled studies assessing pre- and post-glycemic control and quality of life. But in the absence of that and no real funding for a grass-roots effort, we have to start somewhere."

"OpenAPS Changes Lives"

Litchman and colleagues, of whom one is a user and co-developer of the technology and the other a parent of a child using the system, analyzed 3347 tweets using the hashtag #OpenAPS by patients, parents, caregivers, and care partners during 2016-2018.

Tweets from other individuals, including healthcare providers, were excluded. Only English-language tweets were included, but they came from 92 different countries.

Overall, "the analysis resulted in one overarching theme: OpenAPS changes lives," the authors write.

Users indicated improvements in HbA1c, with some tweets posting personal best values. Among those who provided them, HbA1c results ranged from 4.9% to 6.8%. Individuals also tweeted about time in range and experiencing less glucose variability.

Users also frequently tweeted about the emotional impact the system had on individuals and their families, noting reductions in diabetes-related "burden" and "distress," with the automatic adjustments freeing them from constant mental tasks.

Similarly, Pettus says that in the year since he's been "looping," "it's allowed me to be lazier about my diabetes. If I go to bed high or low, things will correct. I have been able to ease up on the amount of mental energy I put into this disease."

Users also perceived the systems as safe, describing features within OpenAPS as including "extra security against untreated overnight hypos."

However, users didn't tend to view OpenAPS as a cure.

Similar to the Medtronic MiniMed 670G and other systems in development, users still must count carbohydrates, maintain the equipment, troubleshoot in case of failure (such as when cell coverage is unavailable), and with some CGMs, perform regular fingerstick calibrations.

And despite general support for the system's built-in safety mechanisms, some tweets expressed concerns about the reliance on older-model, out of warranty insulin pumps.

"Be Open-Minded About It"  

Tweets reflected varying reactions from patients' healthcare providers to the use of OpenAPS. Some reported their providers were positive about the system based on the improved HbA1c levels; however, others said their providers were resistant to the idea or unfamiliar with it.

But overall, users wanted their providers to be supportive and were willing to change physicians, if necessary. One tweet stated, "I couldn't imagine sticking with a doc that didn't support such advances."

Indeed, Pettus advises clinicians to "be open-minded about it. You don't have to necessarily recommend it or know all the nitty-gritty of it, but at least don't shut somebody down or naysay it if they show interest or if they come into your office on it."

Challenges and Future Course

Tweets also discussed the adaptability of the systems to meet individual needs, but others focused on difficulties in obtaining the necessary equipment and challenges in getting the systems to work.

Often, when someone tweeted about a difficulty, others responded by offering various types of help, including links to OpenAPS directions, answers to specific questions, encouraging words of support, or connections to individuals or websites where OpenAPS supplies could be purchased.

Litchman and colleagues acknowledged the bias in their data source, noting "there may be individuals who tried OpenAPS and stopped due to technical challenges or untoward effects. However, this was not identified in the dataset."

Pettus said he doesn't think OpenAPS is currently a solution for the majority of people with type 1 diabetes, but more that it's a proof of concept.

"This particular system as it stands now is not going to move the needle itself. But these grassroots technologies can become commercially available and are moving towards that. People may view artificial pancreas technology as kind of fringe, but it's already here. I think that's the point."

Lichtman has reported no relevant financial relationships. Pettus has reported consulting for Sanofi, Novo Nordisk, MannKind, and Insulet.   

J Diabetes Sci Technol. Published online September 10, 2018. Abstract

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