Dr. Kevin Johnson (second from left) speaks at the Connected Health Conference on a panel with, from left, moderator Susan Dentzer, Michael McManus, Bray Patrick-Lake and Greg Simon.
Dr. Kevin Johnson, chief informatics officer at Vanderbilt University Medical Center, has a theory about how to explain precision medicine to laypeople.
“Homeless patients should not get medications that require refrigeration. That is precision medicine,” he said during the opening session of the Connected Health Conference in National Harbor, Maryland.
Another panelist, Gregg Simon, executive director of the White House Cancer Moonshot Task Force, agreed with that philosophy. “We need to avoid being grandiose when we talk about precision medicine,” he said.
And the field has to become more patient-friendly. Simon told the story of a friend who died of glioblastoma. During his treatment, the friend had to commute from his home in New York City to Dana-Farber Cancer Institute in Boston.
“We still put the burden on the patient,” Simon said. “If precision medicine is going to thrive, it needs to shift the burden off the patient.”
Simon said that family histories and lower-tech tests often can be more valuable than a genomics screening.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
If a genomics screening is necessary, Michael McManus, senior health and life science solution architect at Intel, would prefer it happen sooner rather than later because there is “tremendous downstream value” for payers in terms of preventive care, he said. Unfortunately, some payers look at the short-term cost of precision medicine and run away, and, of course, little happens in healthcare in the absence of reimbursement.
“I would like to see all this reimbursement done early,” McManus said. He added that he would like to see physicians trained in genomics and electronic standardized in genomic information.
“I’d like to see machine learning be widely deployed,” McManus added. Once healthcare figures out its stubborn interoperability problem, McManus envisions one organization being able to analyze data from another without the records actually having to move.
First, though, there also has to be agreement on where and how long to store genomic data. Each complete genome sequence is a terabyte. He also said that the Food and Drug Administration and the Clinical Laboratory Improvement Amendments (CLIA) framework need to work out some regulatory turf issues.
Clinicians need to be educated as well, according to Johnson. “The obstacles that keep me up at night start with education of physicians and nurses and healthcare professionals,” he said.
But data is where the future of medicine is at, particularly as it applies to patients, said the conference’s de facto host, Patricia Mechael, who runs the Personal Connected Health Alliance.
“What gives me hope is that technology doesn’t lie, or even fib just a little,” Mechael said. Data can motivate healthy behaviors and promote better living.
Photo: Neil Versel/MedCity News
