Patients MacGyvering: a resource for device and equipment manufacturers
To solve problems that patients actually have is a challenge. Companies miss opportunities when blindly offering patients what people other than patients say they need. When medical device or equipment manufacturers are looking for ideas or trying to think of ways to improve their product, they should pay attention to the MacGyvering being done by patients and caregivers.
In 2015, the Oxford Dictionary added the verb MacGyver. MacGyver means “to make or repair (an object) in an improvised or inventive way, making use of whatever items are at hand.”1 “MacGyver” was a television show that ran from 1985 to 1992. Angus MacGyver was a secret agent who, in desperate, seemingly unsolvable situations, used common items to save the day. For instance, in one episode he used the aluminum wrapper of a stick of chewing gum to repair a blown fuse.2 In another, he defused a bomb with a paperclip.3
In many ways, patients and caregivers facing problems that might seem unsolvable, MacGyver their way to solutions. Catherine Rose has a child with a rare genetic condition that includes deaf and blindness and complicated medical history. But Rose says, “When I look at Alexis, all I see is possibility.” An engineer by training, Rose has used her expertise to create a CPAP mask to fit a toddler and to support Alexis’ breathing during sleep.4
But patients and caregivers don’t have to be engineers or computer programmers. Stacey Ashlund is the parent of a child with a rare disease called Usher’s Syndrome. Born deaf, her son also has retinitis pigmentosa, a defect in the photoreceptors of his eyes which causes progressive vision loss. She’s been MacGyvering ways to deal with the cochlear implant he has had since he was a one year old. “The pieces were small and dangerous if swallowed. Most pieces are tan or brown which makes them nearly impossible to find if dropped in the places young children typically play like sand or bark on playground.” To prevent loss of the expensive parts she added, “I sewed fabric harnesses for him to wear the processors under his shirt and used wig or toupee tape to keep them from falling off their ears. For swimming, I tied them in a heavy duty balloon to keep them dry.”5
Social media has become a platform to share these life hacks. On Inspire, patients and caregivers are MacGyvering to improve their experience with medical devices and equipment and sharing about it. One Inspire member with a urostomy shared how she designed a night-time drainage system. Before she MacGyvered, if she had to get up at night to empty a full bag, she would empty it, rinse it, pour cleaner in it, hang it up to dry and then attach another bag to her stoma. All of which interrupted her sleep in a significant way. Her new system connects her bag to the shower drain. She wrote:
“I attach my usual tubing to my bag, connect the new tubing to that. The other end of the tubing goes into my shower drain, which I have covered with a rubber square, that I made a hole in, and a metal plate for weight. I did those 2 things to keep any possible smell from coming up, since urine would be standing in the p trap during the night….I tried out my new night drainage system last night. AND SO FAR IT WORKS….”
Another patient with an ostomy used the top from a Starbucks grande cup to adjust their bag attachment to fit their stoma more securely. Patients in wheelchairs recommend a chair leash to save them in ‘chair chasing.’ “Attach one end if it underneath the seat in your vehicle and when you go to transfer, you can clip it to your chair and avoid the all too often runaway wheelchair.”
To reduce marking up the walls and molding of his house, one Inspire elder caregiver shared his hack of putting the front wheels of his walker on the inside and updated his walker with swivel wheels. He also created a handicapped snow shovel,
“only scoops half a load as [it is]narrower. Right hand pushes shovel in the snow. Left hand pulls up on the second handle, twist to the side while holding the load up. Twist the right wrist to unload the shovel, then back and do it again. Much easier on the back.”
Ashlund’s advice for manufacturers is simple. “Interview real users and see what their pain points are -don’t jump in with solutions. Just record their struggles and find the common areas. Asking professionals doesn’t give the same information – it has to be the actual users in their real-life settings.”
Inspire’s communities are a resource for device and equipment manufacturers to learn about problems that patients are actually facing and to create solutions. Contact us for more information.
Inspire offers a trusted community to patients and caregivers. Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice. In so doing, we support faithful operationalization of patient-centricity. Take a look at our case studies, eBooks and news outlet coverage.
4Email and phone interviews conducted with Catherine Rose February through March 2014
5DM interview on Twitter conducted with Stacey Ashlund conducted March 1-6 2018