How patients are hacking healthcare with open source technology

Open source technology is increasingly being adopted by patients to monitor conditions, share data, and develop medical devices in ways that were once restricted to healthcare professionals and incumbent institutions like biotechnology companies. These open source software programs are made available to the public with a license that allows anyone to view, use, modify, and distribute their source code (with community governance.) This approach fosters collaboration, innovation, and transparency, and empowers conscious innovators to contribute to healthcare projects from anywhere on the planet. Various disease communities, software engineers, and patients have leveraged the benefits of open source to democratize problem solving in healthcare.  

Leveraging open source to manage diabetes  

The diabetes community is particularly active in developing open source software and hardware. One of the most prominent examples of patient-led open source initiatives is Nightscout, which was initially developed by parents of children with Type 1 diabetes and has continued to be developed, maintained, and supported by volunteers. Nightscout allows patients to wirelessly transmit data from continuous glucose monitors (CGMs) to web-based platforms, giving them instant access to their glucose levels, insulin delivery, and trends. It also allows parents of children with Type 1 diabetes to remotely monitor their children’s CGM data. The system is customizable, allowing users to set alerts for high or low glucose levels and view data from multiple devices in one place.   

OpenAPS (Open Artificial Pancreas System) is another patient-led initiative that automates insulin delivery for people with diabetes, creating an “artificial pancreas.” According to OpenAPS, it is “designed to automatically adjust an insulin pump’s basal insulin delivery to keep blood glucose (BG) in a safe range overnight and between meals. It does this by communicating with an insulin pump to obtain details of all recent insulin dosing (basal and boluses), by communicating with a Continuous Glucose Monitor (CGM) to obtain current and recent BG estimates, and by issuing commands to the insulin pump to adjust temporary basal rates as needed.”  

Founded in 2013, Tidepool, an open source, not-for-profit company “focused on liberating data from diabetes devices, supporting researchers, and providing great, free software to people with diabetes and their care teams” is radically transparent. They make their coding documentation publicly available as well as what they are working on at all times, which is posted on their developer portal. Tidepool has been successful in receiving FDA clearance for their insulin dosing app, Tidepool Loop.  

Democratizing access to prosthetic and bionic limbs

There are several open-source projects focused on developing prosthetic limbs, aimed at providing affordable, customizable, and accessible solutions for people around the world. These projects often combine hardware, software, and community collaboration to create prosthetics that can be easily modified, repaired, or improved upon. Open Bionics is an open-source initiative that focuses on the development of affordable, light-weight, modular, adaptive prosthetic limbs with a focus on utilizing 3D printing. A variety of other projects prioritize the creation of prosthetic and robotic hands, like e-Nable, Limbitless Solutions, and the Yale Open Hand Project.  

Necessity is the mother of invention: Infectious and rare diseases   

When the Covid-19 pandemic saw shortages of ventilators and PPE, biohackers and the open source community stepped up. One mother figured out how to reverse engineer a breast pump to function as a ventilator. In Columbia, an engineer started a global open source ventilator project with all of the design files, data, and source code available on GitHub to any enterprising creator, which was rapidly trialed on artificial lungs during the equipment shortages. A team in England prototyped a personal respirator for healthcare staff to reduce the risk of infection and made the specifications open source.  

One of the challenges of understanding and treating rare diseases is how few cases there are, and therefore patient data to be used for research. Open Treatments is a nonprofit that runs the world’s first open source software platform to decentralize drug development and empower anyone in the world to create a treatment for a genetic disease. It has been used to enable treatment for 400 million patients around the world (and counting!) The Pediatric Data Commons brings together multiple types of clinical data together in one place and the portal offers a place to connect on cross-disease research and interoperability with other data commons for 12 types of cancer.  

The sky is the limit  

A common thread across all these open-source healthcare projects is the use of ingenuity, curiosity and effort, powered by the internet, to create new solutions and foster patient autonomy. From massive datasets for pharmaceutical development to closed-loop diabetes management software to 3D printing files to create new hands for children – the open source community has done a world of good for patients.  For more information on open source healthcare projects – either to benefit from or contribute to –  check out Awesome Health on Github, Wikipedia’s list of open-source health software and PatientInnovation.com.  

Katie D. McMillan, MPH is the CEO of Well Made Health, LLC, a business strategy consulting firm for health technology companies. She is also a curious researcher and writer focusing on digital health evidence, healthcare innovation, and women’s health. Katie can be reached at katie@wellmadehealth.com or LinkedIn.