By Susannah Fox
April 9, 2020
The internet gives us virtually unlimited access to each other. That deceptively simple insight is an untapped opportunity in health care. When companies are searching for their next idea, they should look to the online communities of patients who are working to solve their health care challenges on their own.
Young people lead the way: 51% of U.S. adults ages 18 to 22 years old say they have looked online for people with health concerns similar to their own. Eight in ten were successful, mostly finding each other through search, YouTube, and other social platforms. And when asked to think about the most recent time they found health peers online, 91% of young adults said it was helpful. The benefits of such connection seem intuitively obvious and have been confirmed in academic studies. Yet, as I’ve seen in my work both in the private sector and as a former chief technology officer in the U.S. Department of Health and Human Services, peer-to-peer health networks are largely being ignored by businesses and even most clinicians. These are satisfied customers for a product that nobody is selling – yet.
Consider Type 1 (insulin dependent) diabetes. People with Type 1 diabetes must tightly manage their blood sugar by monitoring their levels, tracking what they eat and carefully calculating how much insulin they need to take. A mistake could make their blood sugar go dangerously low, potentially causing a seizure or loss of consciousness, or dangerously high, resulting in nausea, confusion, and blurred vision. Untreated, they could die.
These high-stakes decisions about what to eat, how to manage blood sugar fluctuations, and how much insulin to take, are generally made in the moment, without a clinician’s guidance. And it is a daily, lonely slog. People with the same challenges – what I call peer patients — can fill in gaps in knowledge and act as a backstop against misinformation or miscalculation. The American Diabetes Association, the Association of Diabetes Care & Education Specialists, and the Academy of Nutrition and Dietetics all consider peer connections to be an essential supplement to clinical support and studies show that participants in peer-to-peer health care programs manage their condition more effectively than those without this support.
The market for peer-to-peer connection is enormous. Half of U.S. adults live with at least one chronic health condition and many spend hours trying to find others like them to ask questions and trade ideas – or to simply say, “I’m here. I see you.” That’s the first stage of peer-to-peer health care: To gather together.
The second stage happens when someone finds a new strategy or treatment that works for them or has an idea they think might help other people. By asking for feedback and crowd-sourcing solutions, an innovator can develop and spread an idea, even if it is only among small groups of people, unrecognized and unsupported by mainstream institutions. (It should be noted that misinformation can also spread in peer-to-peer networks; one solution I’ve seen is for clinicians or other experts to engage the community to expose and correct it.)
The third stage happens when someone with resources takes notice of an innovative patient community. It could be a pharmaceutical company researcher who offers to help test what the citizen-scientists have found. It could be a business leader who helps shape the inventors’ pitch for more funding or for regulatory approval. It could be a policymaker who puts a stop to monopolistic behavior, allowing a fledgling startup or movement to keep growing. I have seen examples of each one of these in the course of my work.
That third stage, when innovation for a few is scaled up for many, is unfolding now with remote monitoring in diabetes and it holds lessons for all conditions and all health care leaders.
A patient-created solution
Continuous glucose monitors measure blood sugar levels with a sensor under the skin and send that information to a separate receiver or mobile device in close proximity. Crucially, they collect data every five minutes. But these monitors originally had a locked data feed that didn’t travel beyond the receiver, making it impossible to share the data in real time with caregivers somewhere else. You had to be physically with the device to see the data – a significant problem, for example, for parents who want to know how their kids with diabetes are doing at school.
This keep-out attitude has had serious implications. Consider what happened to Dana Lewis.
Dana has Type 1 diabetes and is a very deep sleeper. Living alone, she worried that her monitor’s alarm was not loud enough to wake her if her blood sugar fell too far in the middle of the night. She and her mom worked out a back-up system of early morning calls and texts to be sure that Dana woke up every morning, safe and sound. But Dana wanted independence and spoke to device manufacturers, asking them to make louder alarms. Their answer? No. The alarms, they said, are loud enough “for most people.” In shutting down Dana, they ignored the possibility that they could learn from one of their users and improve the product.
Dana had an idea about how to build a custom alarm if only she could get access to her continuous glucose monitor data. Luckily, she was active on Twitter alongside other people living with diabetes (stage one of peer-to-peer health care).
A dad named John Costik tweeted that he had managed to free the data from his child’s device. John, an engineer, studied the device’s software and wrote a program that would send the monitoring data to a computer, phone or smartwatch. He shared the instructions online, coached other parents and people with diabetes about how do the modification, and Nightscout was born – an amateur diabetes remote monitoring system created by and for people who use continuous glucose monitors. Now, blood sugar data can be sent, for example, to a parent’s smartwatch so they can monitor their child’s levels while at school, on a field trip, or at a friend’s house. This had been impossible under the rules originally set down by the device companies.
Dana adapted John’s work and cobbled together a working alarm that was loud enough to wake her, and she shared what she did online, leading to further collaborations that enabled community members to build their own systems to also automate insulin delivery. That continuous cycle of peer-to-peer knowledge sharing pulled Dana, John, and other ambitious people with diabetes into the second stage of advancement, where their questions are being answered and their needs are being met without the help of device companies or clinicians.
Dana, John, and their communities are pioneers – brave and skilled activists who have improved hundreds and maybe even thousands of lives. But most people are not willing or able to hack into their own medical devices. Indeed, an amateur’s mistake could be deadly. Happily, they no longer need to.
In 2015, Dexcom, one of the major manufacturers of diabetes-management devices, responded to the market demand it was seeing in these peer-to-peer networks and created a continuous glucose monitor with a share function that can send data to a smartphone. This solved one of many problems identified by people who use these devices. Now, thanks to the leadership of another diabetes dad, Howard Look and his team at Tidepool, the FDA and the major manufacturers are discussing how to support the roll-out of a suite of safe, reliable data platforms that build on the initial functionality pioneered by John, Dana, and other home innovators, moving beyond remote monitoring and into automated insulin dosing. That’s the third stage of peer-to-peer health care, when mainstream institutions help to take an idea to scale.
Patients and parents created their own solutions and exposed not only an opportunity for better management of diabetes but also new business opportunities. Existing businesses and stakeholders have a head start, but this emerging market has potential entry points for entrepreneurs, too.
What does this mean for the wider health care market? What are the elements to look for in spotting an opportunity like this one?
1: Look for an area of health care where the needs of patients and their families are not being met. Three obvious groups include: people with undiagnosed conditions, people who carry shame or embarrassment about their health condition, and people who feel invisible or alone. Now consider all the people whose treatments are painful, unpleasant, time-consuming, or a burden on their loved ones. Add the people who can’t afford their medications or otherwise do not have access to care. Once you start looking, you will see that there is a huge group of people gathering online and seeking solutions but who are often ignored. If you can help them, they will be eager customers for your innovation.
2: Find the people in that group who are creating their own solutions, work-arounds, and hacks. They are the natural entrepreneurs and inventors who will not rest until they solve a problem. Listen to them. Partner with them.
3: Create or direct resources to platforms where people can trade ideas, prototypes, and questions. This is a significant business opportunity in and of itself. Platforms will fuel the peer-to-peer revolution, helping people to share their designs, collect feedback, raise money, and publicize both the problem they are tackling and the solutions they are testing. Dana and John connected on Twitter and the Nightscout community gets a lot of its work done on Facebook. Imagine what they could accomplish on platforms expressly designed for collaboration and data-sharing.
4: Look for or attract a diverse group of problem solvers. If you’ve got engineers, then bring in designers. If you’ve got patients and caregivers, then bring in clinicians, policy makers, and business people. If you’ve got professionals, bring in amateurs. Be welcoming to outsiders. People coming in from a new angle will see things the traditional stakeholders can’t see. Continuous glucose monitors were on the market for more than a decade before patients decided to free their data from their devices and demonstrate a new opportunity for manufacturers.
5: Connect with mainstream institutions. It’s all well and good to create a solution that works for one person, or a small group of people, but to scale a safe, reliable innovation you need to involve people with access to resources. Pioneers may be willing to take risks that would not pass scientific peer review or the regulatory process. Businesses, however, need to stay on the right side of the law, both in terms of safety regulations and the natural laws of biology, chemistry, and physics. Do not skimp on your testing, legal, and government affairs budget.
The internet is fueling people’s ability to connect with each other, to trade ideas and solve problems. It is a transformational opportunity for health and health care. And it can’t happen soon enough.