In a clinical trial, physicians, statisticians and trial designers all receive compensation. So why, wonders Jen Horonjeff, who has had arthritis since infancy, isn't the same true for patients?
"What if patients could share in the prosperity?" she asked during a session, titled "We're All in This together: Community and Partnership in Healthcare" at the Stanford Medicine X |CHANGE conference Sunday. "What if they could reap the benefits of their contributions?"
The three-day conference featured a variety of speakers, workshops and other events to catalyze patient-focused innovation in health care.
Horonjeff is a co-founder of Savvy Cooperative, a company that helps patients become advisors for the health care industry and get paid for their work. "My grand vision is that patients have equity in the health care market."
"There's an imbalance of power in the health care industry, and it's the patients who are getting the short end of the stick in terms of who's making money and who's making decisions," Horonjeff said.
But the benefit isn't just for patients. Their advice, even if it comes at a price, can be highly valuable to the health care industry, she noted. "When people don't talk to patients things fail," she said.
As an example, she described an inhaled insulin device that was brought to market after years of work. The product tanked because it was too big and patients didn't want to carry it around, she explained.
Relying on data can lead the health care industry astray, Horonjeff said. "You have to talk to human beings."
Cinde Dolphin, who spoke during the same conference session as Horonjeff, agreed: "Patient innovation can change the future of health care," she said.
Dolphin is reaping the benefits of her own patient innovation: A four-time cancer survivor who has undergone multiple surgeries, she's marketing her own product -- a carrier for a Jackson-Pratt drain, a grapefruit-sized bulb that collects fluids after surgery.
"I knew that my medical team probably never had to deal with a JP drain," she said. They didn't know that "these drain bulbs can cause a patient a lot of stress."
Nurses typically safety pin the bulb to a patient's gown or clothing. But showering is a problem, and opening and closing a sharp pin next to a plastic bulb is risky. So Dolphin designed a zippered carrier from mesh laundry bags that ties around the waist. She's now marketing it to health care providers.
"I am no longer just a cancer survivor," she said. "I am now a changemaker. I plan to enable and empower other patients to be hackers and find new ways to address their everyday needs."
"Patients have solutions," she said. "We just have to give them a voice and a seat at the table."
Photo courtesy of Stanford Medicine X | CHANGE