Kristen Valdes said her daughter Bailey was born with a significant autoimmune condition, but that it took seven years and her daughter's near-death experience to get the correct diagnosis.
Bailey nearly died after she was prescribed medication for a sinus infection that was adverse to her autoimmune disorder. The almost fatal event could have been avoided had interoperability allowed physicians to see the entire medical record of her daughter's care, Valdes said.
Valdes advocated for seven years for an appropriate diagnosis. Along the way, there were breakdowns in communication, countless misdiagnoses, costly repeated procedures and diagnoses based on limited and siloed health data.
Sitting in a specialist's EHR the day a pediatrician prescribed a sinus medication contraindicated to Bailey's specific disease, was the correct diagnosis for Bailey's autoimmune condition. The specialist's EHR file had no connectivity to the pediatrician's office.
"She nearly died. That could have been completely avoided had we had interoperability," said Valdes during the HIMSS20 Digital session, "From Healthcare Executive – to Caregiver – to Entrepreneur."
Medical error is the third-leading cause of death in the U.S., after heart disease and cancer.
It was especially frustrating to Valdes because she worked in the healthcare industry. She said she helped to build one of the first private Medicare Advantage plans for a company that was eventually acquired by UnitedHealthcare. She became an executive for the nation's largest insurer and helped UnitedHealth Group's Optum scale key technical aspects of the program.
But her daughter's experience inspired Valdes in 2015 to launch b.well Connected Health, a company that aggregates medical data fragmented in the various corners of a patient's health record.
The platform, which she said was among the first of its kind, allows patients to sync their medical information so they can make better decisions.
Healthcare has been slower to digitize than other industries. When it began catching up, it was not well executed, Valdes said.
"We took really poorly-designed workflows, and we put them in an app, and we expected consumers to come use them," Valdes said about the first attempts at digitizing medicine.
Today's healthcare industry is now vastly digitized, especially with the growth in telemedicine seen during the ongoing coronavirus pandemic. However, the industry still lacks connectivity, requiring patients to piece together a health plan on their own as they navigate a different portal for each medical office they visit.
"My daughter has 17 patient portals, none of which talk to one another or house her correct medical record," Valdes said. "This can lead to errors."
Valdes said the possibility for advancements in connectivity grew with the 2016 passage of the 21st Century Cures Act, which she called the "sentinel event in healthcare that no one saw coming." The act required health information technology developers publish application programming interfaces (APIs) that allow health information to be accessed and exchanged without special effort.
Valdes said the law has led to efforts to standardize data sharing so healthcare is more easily streamlined for patients. She said interoperability can help patients direct their own healthcare experience, allowing them to see alternative prescriptions or the most convenient pharmacy for pickup.
She said it can also help fill gaps that patients might not be able to identify without synchronized care.
The hope is for aggregators to also help patients receive alerts about their healthcare, including how side effects from certain prescriptions can impact their conditions, as her daughter experienced.
She named her company after her daughter, whom she has called "B" since she was a child.
"Bailey is our chief inspiration officer," Valdes said, "who reminds us every day why it's important to empower consumers, their families and their communities with the ability to advocate for themselves and for their loved ones."
Max Sullivan is a freelance writer and reporter who, in addition to writing about healthcare, has covered business stories, municipal government, education and crime. Twitter: @maxsullivanlive email@example.com
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