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Editor’s focus: A ‘personalized’ problem in the public space
September 2018
by Jeffrey Bouley  |  Email the author
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Let’s get personal, folks. Or, more accurately, personalized—as in personalized medicine. Or precision medicine. Because it doesn’t matter which term you are using, as one of two things are likely to happen: The person or audience you are addressing will know they are the same thing, or they will have no idea what you are talking about if you drop either term.
 
Look, I’m in pharma/biotech journalism. Even if I was in more general healthcare writing or physician-specific medical journalism like I used to be before DDNews, no doubt I would know what personalized medicine was. Most of you readers are sitting at benchtops with all kinds of lab equipment or are involved with R&D for therapeutics or diagnostics on some other level. So chances are really good that you know what personalized medicine is. To most of us right here, right now, in this magazine space at this moment, we are aware of the existence of precision/personalized medicine as well as its vast potential.
 
In fact, the guest commentary in this issue, “DNA sequencing is cancer’s next frontier,” notes in its very first paragraph: “‘Precision medicine’ and ‘personalized care’ used to be jargon-y buzzwords that, while exciting, meant little to anyone outside the healthcare community.”
 
And it is true that it is no longer just jargon. The term is becoming much more mainstream than it used to be.
 
But—yeah, there’s that nearly inevitable but—we would be foolish to assume everyone else knows what it is. Or even most people. Though we sometimes do assume, and I count myself among that group, and that is a problem. Because, as a recent survey indicates, most Americans are not familiar with personalized medicine.
 
Back in May, results were released from a representative survey of 1,001 Americans that was conducted by the Personalized Medicine Coalition (PMC), and it shows that most Americans “are not familiar with personalized medicine, an evolving approach to medicine that can make the health system more efficient and effective.”
 
Just a few months earlier, PMC had noted that in 2017, personalized medicines accounted for more than 20 percent of new drugs approved by the U.S. Food and Drug Administration (FDA)—something that marked a four-year trend.
 
As PMC notes, “Each of these therapies is designed for a small population of patients that is highly likely to benefit from the treatment. When guided by the results of molecular diagnostic tests, the use of these therapies helps ensure treatments are targeted to only those patients who benefit from them, sparing the expenses and side effects associated with treating those who do not.”
 
But as noted by PMC’s survey, “Public Perspectives on Personalized Medicine: A Survey of U.S. Public Opinion,” which was conducted by KRC Research, 67 percent of Americans have never even heard the terms “personalized medicine” or “precision medicine,” which are often used interchangeably to describe the process of highly targeted medical interventions.
 
In fact, only 13 percent of respondents indicated that they feel “very informed” about the topic.
 
PMC President Edward Abrahams said the results underline the need for education, especially as policymakers in the public and private sectors consider the future of healthcare in the United States, noting, “We cannot have informed conversations about how to maximize the use of our healthcare resources until we understand the role that personalized medicines—which now represent one of every four new drug approvals at FDA—can play in targeting those resources. These survey results suggest that we have our work cut out for us when it comes to educating the public.”
 
Let’s get to work, not just in the print media and our personal conversations with the “civilians” out there, but also on social media. As Randy Willis’ “Out of order” column this issue notes, that’s a powerful place to make connections, have conversations and open eyes.
 
It also happens to be a place where misinformation spreads fast, so let’s set the story straight. Because I still occasionally see people online horrified that scientists are making “humanized mice” and wondering what horrors will result from mice that have human intelligence (yes, there are people who think that and spread such “knowledge” through the internet) and what might be unleashed on the world. I don’t know how misunderstanding of precision/personalized medicine could play out online, and I don’t want to find out.
 

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