Our broken healthcare system defeats even the most empowered patients
Jacobs has postural orthostatic tachycardia syndrome, and describes it best in her own words:
I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It's a veritable no-mans land of drugs and specialists where there's no cure and very little understanding.
I'm healthy enough to have a day job advising the people that chart the course of American health policy.
Cryer was diagnosed with IBD as a teen-ager and received a liver transplant in her twenties. She has a law degree and has worked with the FDA, PCORI, and the NIH. She runs her own consulting company to help pharmaceutical, biotech, and diagnostic firms work with patients and physicians.
Both women spoke Sunday at the XXinHealth event in Washington DC and both told absolutely awful stories of hospital stays and completely uncoordinated care.
Cryer said that once she was put in a makeshift room with no bathroom. It was divided by a curtain from a resident break room. As she lay in bed, she could hear them talking about patients.
"The patient side of me thought, 'I'm immuno-suppressed in three ways,' and the lawyer side of me thought, 'HIPAA violations,'" she said.
She also knew that her doctor was in the hospital but hadn't stopped by to see her.
"Part of me was hurt, but another part knew that she was doing scopes, which are reimbursed at a higher rate than complex consults," she said.
Jacobs also has the background to assess her personal hospital experience from a business perspective. In addition to a master's degree in health systems administration, Jacobs has a Six Sigma green belt. She rated a 12-hour wait in the ER for hospital bed at a 7% process cycle efficiency.
Jacobs has personal advocates that cover all areas of healthcare expertise: medical, health IT, public health and health systems. Even with a dream team to help her navigate the system, she has had sub-standard care, authorization nightmares and paperwork frustrations.
"I am a one-woman HIE, and I still have to carry my medical records with me in a big pink binder," she said.
Cryer and Jacobs were not the only healthcare pros at the event to make this observation about America's healthcare system: "If I can't do it, who can?"
Fortunately, Cryer and Jacobs are working inside and outside the system to make healthcare better for all of us. Jacobs is starting a new job as the director of innovation at Aetna. Cryer is working to get all her doctors to talk to one another and to get the administrator of the hospital to address her closet-room experience.
It was sobering to hear how difficult it is for even the most informed people to get the right care, but inspiring to know that nothing has shaken either woman's determination to change that.
Read more: http://medcitynews.com/2013/06/our-broken-healthcare-system-defeats-even-the-most-empowered-patients/#ixzz2YQfGdUCC