Policy-makers and healthcare organizations preach patient-centeredness and patient engagement like gospel these days. Patients who want to be empowered keep talking of their struggles.
That has been evident at the Personal Connected Health Alliance’s Connected Health Conference this week near Washington, D.C.
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There’s either a truth gap, a misunderstanding or a difference in expectations, but there remains a wide gulf between what healthcare leaders say on patient engagement and what patients perceive they are getting.
Tuesday, during the morning plenary session, national health IT coordinator Dr. Vindell Washington reflected on progress in health IT adoption and interoperability as the Obama administration enters its final weeks.
“The fact that healthcare was largely on paper just in 2009 is just incredible,” said Washington, who took the reins of the Office of the National Coordinator for Health Information Technology in August. Today, three-quarters of physician practices in the U.S. are digital, to varying degrees, and about 70 percent offer patients electronic access to copies of their own medical records.
“Providing patients with their information empowers them,” Washington said.
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But getting that information is not so easy, as illustrated by the ongoing dust-up between Beth Israel Deaconess Medical Center CIO Dr. John Halamka and “E-Patient” Dave deBronkart. Washington acknowledged that reality.
“Person-centered in some ways has become a bad buzzword, but I think we all need to recommit to making it a reality,” he said. Washington also showed a slide in which he called “culture change around access to information” a key driver of organizational success.
Just a few minutes earlier on the same stage, Peter Levin, cofounder and CEO of Amida Technology Solutions and a former CTO of the Department of Veterans Affairs, discussed his own frustration with the lack of interoperability in healthcare.
“Some hospitals can’t even share data between departments,” Levin said. He then compared patient access to data to making a withdrawal from a bank. “What if you had to explain to the bank why you wanted your own money?” he asked. That is often what asking for a copy of a medical record is like, and it is unhealthy for patient engagement.
“Let’s elect officials who can help us get the data we paid for,” Levin said. “And let’s train doctors” to share data with patients.
He didn’t mention this, but there was discussion in a patient advocacy group on Facebook Monday about whether Rep. Tom Price (R-Georgia), President-elect Donald Trump’s choice to head the Department of Health and Human Services, truly cared about empowering patients.
In the context of a Kaiser Health News story on Price’s fealty to the American Medical Association and organized medicine in general, discussion participants were challenged to find anything Price has said about putting patient interests first. So far, nothing has turned up.
That would be disappointing news to panelists in a Connected Health Conference session late Monday afternoon. That session, on patients as innovators and partners, featured empowered patients and advocates for patients.
“The truth in the United States is that healthcare is not designed for patients,” said Kevin Fowler, who had a preemptive kidney transplant in 2004. He now is a member of Patient and Family Partnership Council of the American Society of Nephrology’s Kidney Health Initiative.
Humility is missing, as is a “basic understanding of humanity,” added Fowler.
Catherine Rose, director of staff development at construction company Skanska USA, is a caregiver for her daughter, who has low vision that is not correctible with glasses. Rose invented and later sold to Philips a product called LightAide, an educational tool for people like her daughter.
Rose expressed her frustration navigating healthcare for her children. “We have to have more people personally motivated to fix things and not walk by,” she said. “It shouldn’t take a PhD and MBA to marshal your child through the healthcare system,” Rose added.
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