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Users of the artificial Pancreas do-it-yourself & # 39; change lives & # 39;



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

The results of a 2-year "netnography" qualitative analysis of over 3000 tweets containing the #OpenAPS hashtag were published online on 10 September 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 people in the Type 1 diabetes community had become impatient with attempts by the industry to develop an artificial pancreas. They hacked on old insulin pumps and current continuous glucose meters (CGM) and developed open source code to allow the two devices to communicate, or "loops", for the administration of semi-automatic insulin. 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 closed-loop insulin delivery system, the Medtronic MiniMed 670G.

Today it is believed that more than 750 people use self-made artificial pancreas systems worldwide, despite the fact that they are 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 professionals, the industry and the FDA need to understand people's needs and needs. with diabetes in order to serve them better, OpenAPS arises from the need for better solutions, "Litchman said in a statement from his institution.

An endocrinologist using the OpenAPS system itself says it is not perfect, but this new published study is a starting point for better tracking the progress of those who are using "basic" technology. And doctors, he says, should be open about this.

can& # 39;t Hang Your Hat on a study on Twitter

The information gathered from the hashtag tweets suggests that OpenAPS reduces HbA1c, glycemic variability and daily burden of diabetes and that users perceive it as safe. Other tweeted topics related to interactions with health service providers regarding OpenAPS and how to adapt the technology to the individual needs of users.

The authors recommend that doctors "may wish to consider being more informed about OpenAPS and other patient-driven innovations to support positive patient-supplier interactions."

Asked to comment, the endocrinologist Jeremy Hodson Pettus, MD, of the University of California, in San Diego, said Medscape Medical News"I think this whole do-it-yourself pancreatic movement is very important, there are people who use it and it's making a huge difference in their lives, I think it's important that more people know it, and I hope it will become more mainstream and more available. "

As for the new data, Pettus, who himself wears an OpenAPS system, observed: "It is not the scientifically more vigorous study.There are several prejudices, because tweetta on it might not be representative … I tend to agree personally with the results that the system has a real advantage, but I do not think we can hang the hat on a study on Twitter ".

Rather, says Pettus, the article "will spread the word and hope to get more studies to follow it." In particular, we need more controlled studies that evaluate pre-glucose control and quality of life, but in the absence of this and no real funding for a basic effort, we have to start somewhere. "

"OpenAPS Changes Lives"

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

Tweets from other people, including health workers, have been excluded. Only tweets were included in English, but they came from 92 different countries.

Overall, "the analysis produced a general theme: OpenAPS changes lives," write the authors.

Users have indicated improvements in HbA1c, with some tweets that publish the best personal values. Among those who provided them, HbA1c the results ranged from 4.9% to 6.8%. Individuals also tweeted around the time in the range and experimenting with lower glucose variability.

Users often also tweeted the emotional impact that the system has had on individuals and their families, noting reductions in "load" and "stress" related to diabetes, with automatic adjustments that have freed them from constant mental tasks. .

Likewise, Pettus says that in the year since he "walked around", "he allowed me to be lazier than my diabetes, if I go to bed high or low, things will be corrected." I was able to lighten the amount of mental energy I put into this disease. "

Users also perceived the systems as safe, describing the features within OpenAPS as including "additional security against untreated nocturnal hypo".

However, users do not tend to consider OpenAPS as a cure.

Like the Medtronic MiniMed 670G and other systems under development, users still need to count carbohydrates, maintain equipment, solve problems in the event of a failure (for example, when cell coverage is not available) and with some CGMs perform finger calibrations regularly.

And despite the general support for the security mechanisms built into the system, some tweets have expressed concern about the dependence on old-generation and out-of-warranty insulin pumps.

"Be open about it"

The tweets reflected the different reactions of patients' health professionals to the use of OpenAPS. Some reported that their suppliers were positive about the system based on improving the HbA1c the levels; however, others claimed that their suppliers were resistant to the idea or were not familiar with it.

But overall, users wanted their suppliers to be supportive and willing to change doctors if needed. A tweet said: "I could not imagine sticking to a document that did not support such progress".

In fact, Pettus advises doctors to "be open-minded about it." You do not necessarily have to recommend it or know all the details, but at least do not close someone or run away if they show interest or enter your office. "

Challenges and future course

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

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

Litchman and colleagues recognized the bias in their data source, noting that "there may be individuals who have tried OpenAPS and have stopped due to technical problems or unwanted effects, but this has not been identified in the data set."

Pettus said he does not think that OpenAPS is currently a solution for most people with type 1 diabetes, but more that is a proof of concept.

"This particular system as it is now is not going to move the needle itself, but these basic technologies can become commercially available and are moving towards that goal: people can see artificial pancreas technology as a sort of fringe, but it's already here. "

Lichtman has not reported significant financial reports. Pettus reported having consulted Sanofi, Novo Nordisk, MannKind and Insulet.

J Diabetes Ski Technol. Published online 10 September 2018. Abstract

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