Patient Innovation – not all progress comes from industry

The following is a guest blog post by Harold DeMonaco, who has been one of our most active reviewers and guest bloggers throughout our 9+ year history.

As a reviewer for HealthNewsReview.org, I have had the opportunity to review countless media accountings of ongoing research and approvals of new medical devices. While many stories have been excellent, some take on the attributes of a press release from the manufacturer.

Many of us naturally assume that the majority of innovation in medicine comes from manufacturers. In reality, much innovation is at the hands of clinicians and patients. Indeed, patients are innovating in ways that most of us would find surprising. Patients innovate out of need and their stories are both inspiring and compelling. One wonders why the media has not picked up on them.

There is a symposium going on this week in Lisbon, Portugal that is honoring patient innovators, and I suspect this will totally escape the notice of US media. Catolica Lisbon School of Business and Economics sponsors a website called Patient Innovation for patients to share their solutions. This week that site is honoring its first patient innovators award winners. These winners were chosen by a distinguished advisory board that includes two Nobel laureates from two hundred submitted innovations.

Here are the accomplishments of these patient innovators

• Louis Plante has cystic fibrosis and grew tired of the constant need for chest clapping to loosen secretions. Using his background in electronics and his interest in music, Louis developed the Frequencer, a device that uses sound waves to loosen secretions. That device is now commercially available.
• Lisa Crites was diagnosed with breast cancer and had a mastectomy. She was advised to avoid showering post operatively to reduce the risk of infection. She created a water proof bib called the Shower Shirt designed to allow women to shower without risking infection.

• Tal Golesworthy has Marfans Syndrome and was advised that he needed surgery to repair damage to his aorta caused by his disease. His engineering background provided the basis for the development of the Personalized Aortic Root Support, an individually designed support that obviates the need for the more traditional surgery. That device is in use in Europe and is under consideration in the United States for approval.
• Debbie Elnatan’s youngest son was born with cerebral palsy and was not able to walk. She developed a sling-like device that allows children with cerebral palsy to “walk” with an adult.
• Ivan Owen is an artist and tinkerer who utilizes 3D printing to make low cost prosthetics including prosthetic hands. He shares his 3D printing files with others and created a network of “printers” providing low cost prosthetics.
• Juancina Teixeira has a son with Angelman Syndrome who at age 6 refused to stand or walk. One day she noticed that her son was fascinated by helium balloons at a party, attempting to stand to reach them. This prompted her to fill her house with helium balloons prompting her son to jump and walk to reach the balloons. He now stands and walks without assistance.

These are but a few of the stories of patient innovation. You can see these amazing people and a bit more about their stories and their inventions.