Setting up your open-source loop made easy

To start looping, you'll need several key pieces of equipment:

1. An insulin pump that's compatible with looping technology.
2. A continuous glucose monitor (CGM) to monitor your blood glucose levels in real-time.
3. A smartphone that's compatible with open-source looping software (almost all smartphones).
4. Patience and an open mind to learn and adapt to the looping process.

With these essential components, you'll be equipped to begin your looping journey and experience the benefits of automated insulin delivery.

Nightscout is an open-source platform that allows you to remotely monitor your diabetes data in real time. By connecting your Continuous Glucose Monitor (CGM) to a Nightscout server, you can view glucose readings, trends, and other key insights from any internet-connected device. You can also securely share this data with healthcare providers, family members, or caregivers.

Think of Nightscout as a personal website for your diabetes data—similar to how WordPress powers your own blog. You can set up and manage your own Nightscout site to publish and visualize your information. Launching your own Nightscout can be done independently, through our platform, or via other available Nightscout providers.

The term 'DIY looping' was originally helpful during the development phase of open-source software for diabetes management. At that time, pioneers took the risk of managing their health independently and shared how they did so through blogs. The term 'DIY' emphasized that you had to do everything yourself, partly due to the risks involved. However, in the world of software, nothing is completely 'DIY.' Even the developers who write the code rely on open-source software provided by others. While the term 'DIY' was relevant at the time, it now wrongly suggests that you have to do everything on your own. It can give the feeling that if something goes wrong or if you don’t get the results you expected it’s your own fault. These thoughts can increase mental stress and feelings of guilt during your management.

The research group OPEN explains in this article that they chose the term 'open-source' instead of 'DIY' in their papers because anyone starting with looping relies on others, and setting up a loop is a community effort. We also believe in this ethic. By framing it as a community-driven effort rather than a solo endeavor, we remove unnecessary pressure and instead highlight the value of collaboration. People new to looping benefit not only from the tools and code developed by others, but also from step-by-step guides, forums, troubleshooting tips, and emotional encouragement shared by those who have been through the journey themselves. Ultimately, the term 'open-source looping' reflects more than just how the software is built; it reflects a philosophy of openness, inclusivity, and shared responsibility. It’s not just about managing diabetes with technology—it’s about doing it together.

Open-source looping and commercial systems are both designed to automate insulin delivery and improve diabetes management, but they differ in several key ways.

Open-source looping:
- Is developed and maintained by the diabetes community, allowing for customization and flexibility.
- Requires users to take personal responsibility for the configuration and maintenance of their system.
- May not have undergone rigorous testing or regulatory approval.

Commercial systems:
- Are developed by medical device companies and undergo regulatory approval processes.
- Offer customer support and professional guidance for system setup and use.
- May have limitations on customization and flexibility.
- Requires reimbursement from your health insurance or self-payment.

Both open-source looping and commercial systems have their own advantages and disadvantages, and the best choice for you depends on your individual needs and preferences. If you choose open-source, our team is here to help you explore the options and get started.

Below are some of the most common questions we receive.

1. My glucose values are fluctuating significantly, and I don't know what to do anymore. You are not alone. Our team is here to help you understand your data and develop a plan to regain stability and confidence.

2. I don't use social media and prefer not to for personal medical issues. That’s completely fine. Our health coaches adhere to their medical confidentiality oath, ensuring your information remains secure.

3. I don't have the right computer setup to build my loop. Can you help? Yes, absolutely. Once logged in, you can use our secure cloud builder service to streamline the setup process without needing specific hardware.

4. I'm not very tech-savvy — can you guide me through the setup process step-by-step? Of course. While it's important for you to understand the basics of your system, we provide guided support to help you build confidence without feeling overwhelmed.

5. I would like a place to manage Nightscout and have health professionals review my data. We offer an integrated platform where you can manage your Nightscout setup and receive feedback and advice based on your data.

6. My doctor says my HbA1c is acceptable, but I feel my profile settings are not optimal. Can you assist? Yes. While HbA1c and Time-in-Range are important metrics, achieving a good quality of life is equally vital. We can review and help optimize your settings to better support your day-to-day well-being.

7. My healthcare team does not support looping. Can I still get help? Absolutely. We specialize in assisting individuals whose healthcare providers may not yet be familiar with or supportive of DIY looping solutions.

8. I am constantly managing my loop and need more mental rest. We understand. Our team can help you simplify your system and daily management routines, giving you more peace of mind and mental space.

9. I have been trying to build AndroidAPS for hours and it’s not working on my computer. Can you assist? Yes. We can either help troubleshoot the issue with you or offer a cloud-based solution to complete the setup more efficiently.

Our support team is ready to assist you promptly whenever you need it. We strive to respond to all questions as quickly as possible, usually within seconds to a few hours of receiving your question or issue.

Open-source looping is not approved by regulatory authorities and exists in a legal gray area, as it involves modifying medical devices and software without formal approval. Nevertheless, many people consider it a valuable and empowering tool for managing diabetes.

Although questions are sometimes raised about the legality and appropriateness of using open-source systems, the OPEN Project Group published a consensus statement emphasizing the importance of patient autonomy and the right to personalized care:
Considering the evidence on open-source systems alongside the four principles of biomedical ethics – autonomy, beneficence, non-maleficence, and justice – the team believes it is imperative that healthcare professionals be ready and willing to support people who wish to use these systems, and even, “given the ethical implications of withholding information on effective treatment options,” to mention them as an option to people who might benefit.
— Consensus Statement on Open-Source Closed-Looping

The OPEN project, consisting out of more than 40 researchers from different parts of the world, has published a consensus statement in 2022. The article states that healthcare professionals can no longer claim that open-source looping exempts them from providing support. People with diabetes have the right to tailor their care to their individual needs, and healthcare professionals have the duty to guide them as best as possible. The article also provides guidelines for healthcare providers and emphasizes that if a healthcare professional lacks sufficient knowledge about open-source looping, they should refer patients to an expert who does have that knowledge.

Considering the evidence on open-source systems alongside the four principles of biomedical ethics – autonomy, beneficence, non-maleficence, and justice – the team believes it is imperative that healthcare professionals be ready and willing to support people who wish to use these systems, and even, “given the ethical implications of withholding information on effective treatment options,” to mention them as an option to people who might benefit.
— Consensus Statement on Open-Source Closed-Looping

Our service exists out of Nightscout hosting and medical coaching. While our team includes healthcare professionals, our service is does not consist of a medical treatment, nor do we take over the coordination of care by the current medical team. Instead, we offer technical and informational support to help users get their loop running and get the maximum potential out of their loop. We do this based on our expertise in both healthcare and IT, our personal experience, and the information resources online. We operate strictly within the boundaries of the law by providing supportive education for users to make the right decision on their own. We do not give medical advice or treatment.

There are several Facebook groups where loopers can ask questions and share experiences. Some of our team members actively participate in these groups and provide assistance. We also offer a comprehensive overview of Facebook groups dedicated to all open-source diabetes apps.

That said, recent studies suggest that social media platforms like Facebook are often used to share positive emotions, which may not always provide a complete picture of the challenges faced by users. Additionally, we've noticed that many loopers we work with feel hesitant to ask questions in these public forums due to concerns about privacy, disclosing their medical information, or not wanting to discuss frustrations in a group setting.

While mentoring options are available, mentors are volunteers who do their best to help but may have limited knowledge in IT or medical areas, and limited time due to personal commitments. This is where our service can be beneficial. We offer 24/7 support with professionals ready to assist, providing a private and comprehensive option for those who may need help.

We provide support in English, Dutch and Czech.