Eillie Anzilotti at FastCompany: “Diagnosed with juvenile arthritis as a kid, Jen Horonjeff knew she wanted to enter the medical field to help others navigate the healthcare system in America. She went on to get her Ph.D. in environmental medicine, hoping to better understand the social and contextual factors that surround the strict biology of a disease. Throughout her studies, though, something began to irk her. In both the practice of and research around medicine, she found that the perspective of the patient was all but nonexistent.

“What I was finding in healthcare was that there were people who genuinely wanted to help patients and include the patient experience in their work, whether it be research or pharma, but they were never talking to patients,” Horonjeff says. Take a dive into the medical industry these days and you’ll likely see buzzwords like “patient-centered” or “patient engagement” thrown around. Horonjeff recalls many instances of being asked to speak on panels as someone representative of the arthritis patient community. But it didn’t take her long to realize that asking the same person over and over again is not a stand-in for true engagement with and understanding of the entire patient experience.

So in 2016, Horonjeff, along with her co-founder Ronnie Sharpe, who grew up with cystic fibrosis and founded a social network for others with the diseases, started Savvy, a platform to bridge the gap between patients and practitioners. The platform officially launched in the fall of 2017, and recently became a public benefit corporation….
But Savvy also tackles another imbalance in the patient-practitioner relationship. Whenever a patient is seen by a doctor, or enters their information into a medical app or platform, they’re providing the health community an invaluable resource: their data. But they’re not getting compensated for it. To ensure that patients participating in Savvy get something in return, Horonjeff and Sharpe set their platform up as a cooperative, owned collectively by the patients that contribute to it. Any patient who wants to become a Savvy member pays a buy-in fee of $34, which establishes them as a member of the co-op (the fee is waived for patients who cannot afford it, and some other members give more than the base membership fee to subsidize others). “When people become members, they have a voice in what we do, and they also share in our profits,” Horonjeff says….(More)”.

Full Post: This co-op lets patients monetize their own health data