When Patients Become Innovators

Health care consumers are contributing their skills, money, and time to develop effective solutions that aren’t available on the commercial market.

Patients are increasingly able to conceive and develop sophisticated medical devices and services to meet their own needs — often without any help from companies that produce or sell medical products. This “free” patient-driven innovation process enables them to benefit from important advances that are not commercially available. Patient innovation also can provide benefits to companies that produce and sell medical devices and services. For them, patient do-it-yourself efforts can be free R&D that informs and amplifies in-house development efforts.

In this article, we will look at two examples of free innovation in the medical field — one for managing type 1 diabetes and the other for managing Crohn’s disease. We will set these cases within the context of the broader free innovation movement that has been gaining momentum in an array of industries and apply the general lessons of free innovation to the specific circumstances of medical innovation by patients.

Example 1: Managing Type 1 Diabetes

In 2013, Dana Lewis, a professional in health communications in her 20s, joined forces with a software engineer and a few other individuals with type 1 diabetes to develop for themselves what the medical device industry had been promising to deliver for decades: an artificial pancreas. As patients, they sought to solve the problem of low overnight blood sugar levels, a common occurrence that can be deadly. They wanted to design a system that could automatically monitor blood sugar levels every few minutes and provide the right insulin dose to keep the number in a healthy range.

Within months, Lewis and her coinnovators designed an artificial pancreas that used computer code they wrote themselves and off-the-shelf hardware to connect commercially available continuous glucose monitors with commercially available insulin pumps. The device significantly improved Lewis’s ability to manage her own blood sugar levels. She and her colleagues decided to make the design available to others online and make their software open source. This was the start of the Open Artificial Pancreas System (OpenAPS) movement.2 Today, multiple communities participate in this movement, multiple noncommercial DIY artificial pancreas designs are being shared, and thousands of individuals with diabetes use these DIY systems daily to monitor, manage, and improve their health.

Example 2: Managing Crohn’s Disease

Sean Ahrens, a computer science and business graduate from the University of California, Berkeley, became frustrated in his early 20s that there wasn’t any detailed medical information on what he could do to minimize debilitating flare-ups from Crohn’s disease. Although several drug treatments for Crohn’s existed, all of them had significant toxicities and none was effective for every patient. As a result, many people tried to manage and reduce their symptoms through dietary choices. To fill a resource gap for patients, Ahrens, who was diagnosed with Crohn’s when he was 12, created a website in 2011 called Crohnology, where fellow patients were invited to share their experiences regarding interventions and outcomes through an online questionnaire. The site compiled the data so that everyone could see which factors others found troublesome and which were helpful.3Today, the site has more than 10,000 registered users. Crohn’s patients throughout the world have come to find the information invaluable for managing their chronic disease.

Harold DeMonaco, Pedro Oliveira, Andrew Torrance, Christiana von Hippel, and Eric von Hippel

Read the full article on MIT Sloan Management Review

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