In recent years, patients and informal caregivers have begun to play a much more prominent role in managing disease and participating in decisions about their treatment. However, the health care system has barely scratched the surface of their ability to innovate. Our research shows that patients and their caregivers are able to create many different types of innovations. Some actually improve the patient’s health or alleviate symptoms; others make daily life easier. Too often, however, the innovation never moves beyond its originator to benefit others. We must find ways to support and disseminate these innovations, many of which can improve health and quality of life and reduce the cost of care.
Patients are not the only innovators, of course. Many people, across all fields, innovate to address their unmet needs, in a model that MIT researcher Eric von Hippel calls “user innovation.” Traditional “producer innovation” co-exists, and sometimes competes, with innovations that spring out of users and communities. However, while producer innovations have a well-worn path for distribution through standard commercial channels, consumer-originated innovations are substantially less likely ever to leave their inventors’ hands, even when they address common or urgent needs.
Research on Patient Innovation
We have made a formal study of patient- and caregiver-originated innovations. In our initial explorations among patients with rare diseases, we found a variety of ingenious solutions to daily problems, hitherto unknown therapies and treatments, and even new ideas for medical devices.
We then administered a survey to a sample of 500 rare disease patients and caregivers to see how frequently these innovations occur. We found that 40 respondents — 8% of the total — had developed innovative solutions for themselves that even medical experts evaluated as novel. If this fraction remains the same in the larger population, patients and caregivers around the globe may represent a tremendous source of knowledge on how to improve care.
In our ongoing research, we have collected and screened more than 650 innovations developed by patients and caregivers, and have posted them at our Patient Innovation website. Some of them are technically very simple, but offer great value to patients and their families, while others are more advanced and intricate, and have led to new commercial products. The vast majority of them focus on increasing patients’ autonomy and quality of life. Here are some examples:
Good Vibrations for Cystic Fibrosis
LP’s cystic fibrosis increases his risk of lung infections because the disease makes it difficult to clear mucus from his lungs. He used to spend four hours per day doing kinesiotherapy (chest clapping) to alleviate this problem. While attending a concert, he noticed that the vibration of the speakers had the same positive effect. Using his background in electronics, he developed a device that uses sound waves to help clear the lungs. After four years of R&D and clinical trials, the Frequencer™ is the first device on the market to use low-energy acoustic vibrations to reduce mucus viscosity and promote mucus flow in patients with cystic fibrosis.
Showering After Breast Surgery
Following a mastectomy, LC was advised to avoid showering in order to prevent infection through the drain sites. She created a water-resistant garment to enable her to shower normally. Her Shower Shirt® is patented, approved by the FDA as a Class 1 medical device, and commercially available in 36 countries.
Monitoring Ostomy Bags
MS underwent a small bowel transplant followed by an ileostomy (with an ostomy bag). He had no control of the volume of stool output and had to learn to monitor its amount and consistency. He invented the ostom-i™ Alert Sensor, a device that can be attached to any ostomy bag, that sends messages via Bluetooth® to a mobile app to warn the patient when the bag is close to full. The device has been approved by the FDA as a Class 1 medical device and is commercially available through 11 Health, a firm founded by MS.
Breaking Through with Balloons
JT’s 6-year-old son had Angelman Syndrome, which causes developmental delay, lack of speech, seizures, and psychomotor problems. Although he was able to walk, the child refused to stand. One day, JT noticed that the helium balloons at a party attracted her son’s attention and made him want to reach them. She placed helium balloons all over her own house and watched her son jump and walk to reach the balloons.
Plain White Plates
A man with Alzheimer’s disease was having trouble feeding himself because he would try to pick up food from the rim of his dish, rather than in the center where the food actually was. His daughter realized that the floral pattern on the rim was confusing him and switched to plain white plates. Without any patterns to distract him, her father was able to feed himself just fine.
A child suffered from hypersalivation and was too self-conscious to participate in social activities because she couldn’t control the flow of saliva. Her mother made her a set of fashionable neckerchiefs from a super-absorbent material that she could use to take care of the extra saliva in a way that didn’t call attention to her condition.
Gaming for Concussion Assessment
A high school athlete suffered a serious concussion during a basketball game. During the year that it took him to recover, he underwent regular concussion assessment tests and came to feel that they were imprecise. He developed a new concussion assessment tool using Microsoft’s Kinect® gaming platform to measure response time and coordination. He and his medical team are working toward FDA approval for the program, and meanwhile he has made the software available for free download.
Sensors for Wandering
KS’s grandfather suffers from Alzheimer’s disease and wanders alone at night. KS, a technology-minded teenager, created SafeWander™, a thin, flexible pressure sensor that attaches to any piece of clothing and alerts the caregiver, via Bluetooth® and a smartphone app, when the patient gets out of bed. KS has patented his invention, which has won multiple awards, and has created a company to market it.
3-D–Printed Prosthetic Hands
IO, an artist and prop maker, posted one of the “mechanical hands” he had created on YouTube. A carpenter from South Africa who had lost fingers in a sawing accident contacted IO and asked for help in designing and building a low-cost prosthetic hand. IO accepted the challenge and later also developed low-cost 3D-printed prosthetic hands for children. He has publicly shared the digital files used to produce the parts. His work inspired e-NABLE, a large and growing network of volunteers developing prosthetic hands.
When he was a graduate student, DF invented folding wheels for bicycles. He was exhibiting them at a bike show when a wheelchair user approached and asked if he could adapt the technology for wheelchairs, to make them easier to take on a plane. The resulting product, Morph Wheels, transforms a wheelchair into a small, neat package that can go into an overhead bin or the trunk of a car. Morph Wheels is patented, and distributed by 7th Design & Invention, a product design studio that DF co-founded.
Getting the Word Out
The solutions developed by patients contribute to the stock of knowledge about diseases and ways to cope with them, and they also add to the variety of choices to address specific needs. However, studies show that the people who develop these solutions rarely share them. In a study of user innovation in Finland, only 19 percent of the reported user innovations spread beyond their originator. Another study showed that among rare disease patients, only a third of those who developed a solution to cope with their disease shared information about it with others.
This lack of diffusion doesn’t mean that the patients think their innovations aren’t useful, studies have shown. But the barriers to sharing are significant. For more complex innovations, the inventors may lack time, skills, and opportunities to embark on the long process of development, approval, and commercialization, particularly when the profit potential is limited or the inventors’ motivations lie elsewhere. Simpler solutions may not be shared because the innovators don’t have contact with a wider community that would benefit. While some trade their innovations in patient support communities, others are less outgoing.
However, all patients interact with the medical community, which can play a key role in the dissemination of new ideas. Physicians and other members of the care team should be alert for innovations among their patients, and active in spreading the word when they find an innovation that can benefit other patients.
Both physicians and patients can also contribute to a centralized online repository of patient- or caregiver-developed solutions, of the type that we have developed at Patient Innovation. This platform can facilitate interaction among patients, caregivers, and health professionals, and make it easier to spread innovations to those who will benefit the most. As more people use the platform, their collective imaginations may be inspired to create more innovations, and participants can pose specific problems for the community to solve.
Systemic Support for Patient Innovation
From hacking medical devices, designing technical aids from scratch, and finding new therapies to developing technological breakthroughs to rebuild body parts, patients and caregivers are shaping the health care of the future. Patient innovation can potentially transform health care the way open-source software has transformed technology. But in order to do so, it needs to be supported, and to be integrated into the health care delivery system. We are just at the beginning of understanding how and why patients innovate, and how to integrate those innovations to benefit the entire system. Numerous challenges remain, and it is vital that all stakeholders learn to recognize and nurture innovation whenever and wherever they find it.
This article originally appeared in NEJM Catalyst on November 10, 2016.