Survey: Patients are ill-informed about precision medicine

DNA genomics precision medicine
Many patients are unfamiliar with precision medicine, according to a new survey. (Pixabay)

Many patients are unfamiliar with precision medicine, but when they're educated on what genomics can do, they're excited about the possibilities it creates for their care, according to a new survey. 

The Personalized Medicine Coalition and GenomeWeb commissioned the survey of more than 1,000 patients to paint a clearer picture of the general public's attitudes toward precision health. Two-thirds (66%) said they had not heard of either "precision medicine" or "personalized medicine" before. 

But patients wanted to know more. Eighty-two percent said that they were interested in additional information, and when provided with additional details 67% viewed the possibilities presented with precision medicine favorably. 

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"Patients want medicine to look like this," Christopher Wells, vice president of public affairs for PMC and who oversaw the survey, said. 

RELATED: 'All of Us' Program Director Eric Dishman wants to expand precision medicine to all  

Wells, who presented the findings at PMC's annual luncheon on Wednesday afternoon, noted, though, that the survey found patients are concerned about what these treatments cost and if it's covered by their insurance. 

Sixty-two percent said it was a "major concern" that genomics testing would not be covered by their insurance, and 52% worried that the results would be used to deny coverage for treatments they want or need. 

Randy Burkholder, vice president of policy and research at PhRMA, said at the event that part of the problem is that new payment models haven't quite caught up to new ways of thinking about patient care. Value-based payment models are built on a 20th century approach to care that's still rooted in volume, he said. Precision medicine doesn't fit neatly into that approach. 

"The types of tools policymakers use to definite value-based care are rooted in old methods and an old mindset," Burkholder said. 

RELATED: How some major health systems are overcoming the barriers to launching precision medicine programs 

An additional concern for the patients surveyed was privacy. The National Institutes of Health's All of Us program, which seeks to collect data on 1 million people over the next five years, had firsthand experience with patients' reticence to share data, said Stephanie Devaney, Ph.D., the program's deputy director. 

The program has built a number of protocols to safeguard participant's data, and it's crucial to have that in place to attract new enrollees, she said, especially as All of Us targets a diverse cohort of people who may fear how their data will be used. 

Engaging patients on precision medicine requires meeting them where they are since their needs and values will vary widely, said Susan McClure, the founder and publisher of Genomics magazine. 

"Some just want facts, and some want to know how the watch is made," McClure said. 

RELATED: Primary care doctors need help talking to patients about genetic tests 

Outreach doesn't stop with patients, either. Lincoln Nadauld, M.D., executive director of Intermountain Precision Genomics, said it's also crucial to bring physicians into the fold and further educate them on how to explain genomics testing to patients and how to interpret the reports. 

This includes embedding precision medicine in medical education and training, a trend he said is growing. 

"It's almost like the science is out ahead of where we are from a clinical understanding perspective," Nadauld said.