On August 31, I’ll be part of the 2021 Federal Wearables Summit. This post is my attempt to “flip” the event by sharing what I intend to say. Please let me know what you think in the comments below.
In 1986, Eric von Hippel of MIT identified “lead users” as people who identify and solve issues before anyone else in their field even recognizes a problem.
Lead users generate new ideas for products, services, and processes. They modify existing tools and products to create something new that they need, whether that’s sports equipment or an assistive device.
They use what they have on hand without waiting for permission. And their innovations can transform industries.
In banking, 50% of new mobile financial service innovations now used worldwide were pioneered by lead users in developing countries where there is both high need for on-the-go money exchanges and high access to communications technology.[i]
In health care, in a study of 143 drug therapy innovations, 57% were new, off-label applications of an existing drug. The lead users in this case were clinicians caring for patients.[ii]
In emergency response, the Cajun Navy – locals who use their personal boats to rescue hurricane victims – are lead users. Again, they create what they need with what they have on hand without waiting for permission from anyone.
The COVID-19 pandemic created a new cohort of lead users: people living with long-term effects of the virus.
In March 2020, clinicians and public health authorities were telling patients that if they survived the worst effects of the virus, their recovery would take about two weeks. A group of people in a feminist health online community, the Body Politic, started comparing notes on their symptoms and realized that they were experiencing illness that was not being recognized or tracked by anyone.
In April, Fiona Lowenstein, founder of the Body Politic, published an op-ed in The New York Times that triggered an avalanche of attention – particularly among other Long Covid patients who previously thought they were alone in their struggle.
A small group of Body Politic Long Covid patients who happened to be trained in research techniques stepped forward to write and field an online survey. They used what they had on hand – Slack and Google Docs – to collect, analyze, and publish the first report describing Long Covid. There was no data. So they created it.
Their success has been meteoric and credit goes to both the Patient-led Research Collaborative for their work and to public health leaders and scientists for recognizing its worth. The lead users were able to get the attention of the power structure with extraordinary speed.
You may be surprised to hear that I know of many examples of such innovative lead users in health and health care. Not many of them have garnered international attention and invitations to address the U.S. Congress or to shape practice guidelines for their condition, as the Long Covid patients have done, but there is a pipeline of innovation that is operating under our noses.
The internet gives us access not only to information, but also to each other. That deceptively simple insight powers the peer health innovation pipeline. It’s the subject of a book I’m writing for MIT Press. Here’s a quick preview of my findings.
The intake valve of the peer health innovation pipeline is patient communities. It’s a magic moment when isolated patients find each other and say, “I’m here. I see you.” They form groups, tell stories, give and get advice. For some, that connection is all they need.
But then someone in the group has an idea about how to solve a problem they all face. A team forms to create a prototype. They test and refine it. It works. Fantastic! Again, for some people, that’s enough. The innovation doesn’t go any farther than that small group.
Sometimes there’s an entrepreneur in the group who says, “If we get funding and attention, we can make this better and we can help more people like us.” Or a savvy leader at a company or federal agency notices what the small group has created and offers to help. Maybe they hold a prize competition to encourage people to share their lead-user innovations.
This is when the flywheel starts spinning as more people hear about the innovation, peer to peer, and everyone who could benefit from it has access to it, whether it is a product, treatment, or process that has improved.
But, wait. How do wearables fit in?
Just as the Patient-led Research Collaborative used consumer-strength tools to create industrial-strength research, the American people are using consumer-strength wearables to create industrial-strength tracking data for themselves.
Rock Health and the Stanford Center for Digital Health released new, national survey data in March 2021:
- 8 in 10 U.S. adults track some aspect of their health, mostly using digital tools.
- Of those, 7 in 10 are willing to share their health tracking data with clinicians.
- About 1 in 4 are willing to share it with a government agency.
- A smaller group is willing to share it with a tech company.
- 4 in 10 U.S. adults own a wearable. They mostly use them for fitness, but half say they are managing a diagnosed chronic condition.
The full report is well worth reading and shows that the American people are ready for the wearables revolution.
They can be the Cajun Navy we need, able to respond locally using their personal health tracking tools. My recommendation is to create pathways for lead users to share their innovations. We should build people’s skills in personal science and self-tracking. We should open access to every data source possible. We should infuse the best, most promising peer health innovation teams with the resources they need to take their ideas to scale.
The tech is here. People are ready. Let’s go.
Note: The 2021 Federal Wearables Summit is open to the public. Register here.
[i] Paul van der Boor, Pedro Oliveira, Francisco Veloso. “Users as innovators in developing countries: The global sources of innovation and diffusion in mobile banking services.” Research Policy, Volume 43, Issue 9, 2014, Pages 1594-1607, ISSN 0048-7333, https://doi.org/10.1016/j.respol.2014.05.003.
[ii] Harold J. Demonaco, et al. “The major role of clinicians in the discovery of off-label drug therapies.” Pharmacotherapy vol. 26,3 (2006): 323-32. doi:10.1592/phco.26.3.323
Featured image: “mesmerized by numbers” by Hsing Wei on Flickr