How can patients drive the next generation of medical discovery? We can start by empowering those with their own medical challenges to create solutions for themselves.
What’s the problem? In many cases, developers of medical devices are not patients but rather people who are sitting in offices and not in medical facilities.
Can patients help others while helping themselves? According to UC Davis oncologist Scott Christensen, MD, “Equipping a patient with the knowledge their creation can improve the medical outcome of others only adds to their own healing process.”
You, me, and a vast community of patients with cancer can provide a rich resource of ideas based on our real-life experience as patients.
My Personal Experience
I am a patient with cancer who required 9 successive surgeries, and each time I had to deal with post-surgical drains. In every case, discharge nurses dispensed safety pins with instructions to attach the drains to my clothing. I was disappointed that more than 50 years since the invention of JP drains, someone didn’t have a smarter and safer solution.
In response, I created a simple mesh apron with zipper closure to suspend drains comfortably, without safety pins (see www.medicaldraincarrier.com). I named it the KILI Medical Drain Carrier, which can be worn in the shower to hold the drain during showering. This is a wonderful example of a patient ideating a solution that, in turn, assists other patients as well.
“Necessity Is the Mother of Invention”
The adage that “necessity is the mother of invention” could not be more common than in the world of healthcare development. Creating a solution based on an end-user’s perspective is called “human-centered design.”
Herbert A. Simon, PhD, the Nobel Prize winner in economics in 1978, introduced the concept of human-centered design, even though this concept has probably been around since the beginning of time. Dr. Simon’s theory promotes a way of thinking that is obsessive about understanding the perspective of the people who experience a problem, their needs, and whether the solution that has been designed for them is truly meeting their needs in an effective way, or not.
Dr. Simon devoted his research to human decision-making and problem-solving processes. According to him, the best possible discoveries result from empathy; that is, understanding the problem as a result of immersing yourself in the community that will be affected by your invention or design.
In addition to my own invention described above, other examples of extraordinary patient-driven inventions include a multi-port device for infusions; an artificial pancreas; and an infusion pole designed for children, to name a few.
Some of the extraordinary inventors are Nick, Kiley, and a team of 3 inventors.
Nick is a nurse anesthesiologist. His son lived the first 3 years of his life in the hospital, because of bloodstream infections. Nick’s passion spurred an invention that uses color coding to protect patients during the infusion of anesthesia medications.
Kiley, an 11-year-old child diagnosed with cancer, recognized that poles used in infusion rooms are clumsy. With her dad’s help, she developed a backpack with a mini-pole for her infusion bag.
And a team of 3 inventors—all patients with type 1 diabetes—designed a system that monitors blood sugar levels during nighttime hours. Using computer code and off-the-shelf hardware, the device handily provides the right insulin dose, even while the patient sleeps.
Will the Healthcare Industry Listen?
Can we, as patients, begin to hope that the healthcare industry will start to listen to our solutions? A 2015 study in Finland determined that although 85% of the patient developers reported that their innovation very well solved their own needs and the needs of others, only 19% of them saw their inventions introduced into the marketplace for the use of other patients.1
Sadly, many people who develop medical devices for commercial use don’t see a financial benefit to producing small, but necessary, devices. And we, patients as inventors and innovators, lack resources to invest in the distribution of our inventions to ensure that they would also be helpful to other patients.
Medical Innovation Centers
The good news is that many healthcare hospitals and other healthcare providers have started to create their own innovation centers, such as Florida Hospital Innovation Lab; Brigham & Women’s Hospital/Brigham Digital Innovation Hub; Children’s Hospital Los Angeles/Consortium for Technology and Innovation in Pediatrics; and Cleveland Clinic Innovations. These and the other new centers provide a forum for cross-industry experts to revamp protocols for improving patient outcomes.
One other new center is Aggie Square, a soon-to-be-built innovation hub at the University of California, Davis, Medical Center, dedicated to being a state-of-the-art research facility. Aggie Square is meant to engage entrepreneurs, companies, and employees to value inclusion of innovators and spur chance encounters among creative people.
- de Jong JPJ, von Hippel E, Gault F, et al. Market failure in the diffusion of consumer-developed innovations: patterns in Finland. Research Policy. 2015;44:1856-1865.
Aggie Square, UC Davis
Society for Participatory Medicine