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New Survey Shows General Public Lacks Understanding of Personalized Medicine

Eastman, Peggy

doi: 10.1097/01.COT.0000544194.91106.57
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precision medicine; oncology

precision medicine; oncology

Personalized (precision) medicine is becoming increasingly important in health care, especially in oncology. Cancer care is in the forefront of treating patients with therapies tailored to the individual characteristics of their tumors.

But a new survey of 1,001 Americans from the Personalized Medicine Coalition (PMC) and GenomeWeb, an independent online news organization, shows that the majority of respondents are not familiar with the concept of personalized medicine. This lack of familiarity persists despite the fact that precision medicine accounted for more than 20 percent of new drugs approved by the FDA in 2017, the fourth straight year for this trend.

The new report on the survey, Public Perspectives on Personalized Medicine: A Survey of U.S. Public Opinion, was conducted by KRC Research. It found that 66 percent of Americans have not heard of the terms “personalized medicine” or “precision medicine.” Among those who have heard of the field, only 13 percent feel “very informed” about the topic. Only 9 percent of respondents had heard of the federal government's pioneering personalized medicine project, the All of Us Research Program.

Among respondents, only 10 percent said a health provider had recommended a genetic test to them. While 17 percent have heard of genetic counseling, only 4 percent have spoken to a genetic counselor. But the survey makes it clear that, when the concept of precision medicine is explained to them, the public wants to know more. Some 67 percent had a “mostly positive” reaction to the concept, while only 1 percent had a “mostly negative” reaction. Fully 82 percent of U.S. adults said they had an interest in learning more about the field, and 32 percent said they were “very interested” in obtaining more information.

“We have a long way to go” in the public's recognition that personalized medicine is “a better way to go than one-size-fits-all medicine,” said PMC President Edward Abrahams, PhD, at a briefing in Washington, D.C., to release the new report's findings. He said that only by increasing public support for the paradigm change personalized medicine represents will major strides be made in research and clinical acceptance and adoption of individually tailored diagnosis and treatment.

“All of us in this field have a sense of impatience,” said Werner Verbiest, MSc, MBA, Global Head of Janssen Diagnostics, at the briefing. Stating that the concept of personalized medicine is “a much better way of understanding disease,” he noted that “I think we have to do a much better job of telling people what we do. Precision medicine is a step into precision health care.” He told Oncology Times that precision medicine represents a step toward understanding, preventing, intercepting, managing, and curing disease.

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Report Details

Despite the fact that most Americans have not heard the terms “personalized medicine” or “precision medicine,” when they have a better understanding of the concept the majority believe insurance companies should cover personalized medicine. Some 67 percent of Americans believe insurance companies should cover personalized tests and treatments, while 33 percent believe insurers should not cover them. Americans over age 65 and those who have personally faced or had a loved one face a life-threatening illness were more likely to believe these tests and treatments should be covered.

On the survey 70 percent of respondents said they saw opportunities to improve on the trial and error treatment process; 67 percent saw a chance to reduce the need for invasive procedures; 65 percent saw an opportunity to reduce adverse side effects; and 64 percent said personalized medicine could shift the emphasis in medicine from reaction to prevention.

While the survey found that the majority of respondents were generally favorable toward the benefits of personalized medicine, they did have concerns about access, cost, and privacy. Some 62 percent said they worried that a test might not be covered by their insurer; 52 percent said a test could be used to deny coverage for a treatment they want; 59 percent said they might not be able to afford a personalized approach to health care; and 51 percent responded that information about their risk for developing a disease in the future could be used to deny them the long-term care or life insurance they need. Only 10 percent of respondents said they are aware of the Genetic Information Nondiscrimination Act, which prohibits employers or health insurers from asking for genetic test results when making employment or coverage decisions.

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Implications of Findings

At the briefing on the survey results, an invited panel discussed the implications of the findings. Personalized medicine is a way to have better health care outcomes and holds a “potentially transformative opportunity” to achieve those outcomes, said Randy Burkholder, Vice President for Policy and Research at the Pharmaceutical Research and Manufacturers of America (PhRMA).

“We need a consumer movement” to push precision medicine along, said Susan McClure, Founder and Publisher of Genome magazine. She advocated explaining precision medicine in the simplest possible terms, stating that “I think you have to meet people where they are.” She added that patients need to be empowered to ask for the best individualized care.

All of Us, a landmark longitudinal research program at the NIH, is a key element of the federal government's Precision Medicine Initiative and should raise the public profile of precision medicine. This historic research effort aims to advance precision medicine by enrolling one million Americans, said Stephanie Devaney, PhD, Deputy Director of All of Us. She said participants will share their data and will receive information back from the program.

All of Us is a pioneering effort to accelerate research and improve health by identifying individual differences in lifestyle, environment and biology, with the hope of discovering pathways toward the delivery of precision medicine. The overarching vision is to enable a new era of medicine in which researchers, health care providers and patients work together to develop individualized care. In an NIH newsletter, NIH Director Francis S. Collins, MD, PhD, said, “The All of Us Research Program is an opportunity for individuals from all walks of life to be represented in research and pioneer the next era of medicine.”

“Precision medicine works; that is the really good news,” said Lincoln Nadauld, MD, PhD, Executive Director of Precision Medicine and Precision Genomics at Intermountain Healthcare. But, he noted, major barriers stand in the way of progress in the field.

One of the most challenging is the discomfort of the majority of oncologists in reading and interpreting the results of a genetic test, said Nadauld. “It often reads like Greek.”

He noted that at his institution, a tumor board has been implemented to help interpret and explain the implications of findings from genetic tests. In addition, he said, nurse navigators are being trained specifically in genomics so they can talk to patients about their test results and bridge the gap in consumer understanding.

Nadauld agreed with McClure that patients need explanations of precision medicine in the simplest terms possible so they understand its benefits. For example, he said, it can be explained that the same cheek swab used to identify their ancestors through DNA (a popular pursuit today) can also be used to help them get the right medicine.

“We have to keep working in partnership,” said Burkholder. “Payers need to be aware of the value of precision medicine.” He added that patient-centered, value-based reimbursement rooted in modern science represents “an incredible opportunity for personalized medicine.”

The new report on the survey findings states: “...because personalized medicines and the tests needed to inform their use break the mold of a health system that was optimized to deliver medicine based on population averages, the incoming wave of personalized medicines presents challenges related to regulation, reimbursement, and clinical adoption. These challenges are often compounded by the fact that personalized medicine presents a different value proposition than the traditional one-size-fits-all model.”

Burkholder noted that precision medicine can be expensive, and said that “We want to push rebates and discounts down to patients.

“The affordability issue is an important one; it's one we need to solve,” he added.

Nadauld agreed on the need for partnerships: “I think we have to have all stakeholders at the table to solve this issue.” He also agreed that while new tailored drugs can be expensive, payers need to be aware of the reduced costs afforded by precision medicine. Nadauld said that at his institution, when patients with advanced cases of cancer were analyzed, not only did they live longer when they received precision medicine, but they also were less expensive to treat. Specifically, he told Oncology Times, the savings were about $700 per patient per week of life, primarily due to fewer visits to the emergency department and reduced hospitalizations.

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Future Progress

At the briefing, Nadauld said the ultimate responsibility for making progress in precision medicine rests with the physicians who prescribe it. Noting that ASCO has “done a terrific job of developing curricula on genomics for its members,” he said, “It really does fall on the shoulders of physicians to take advantage of these resources.”

He also said there is a need for more education on precision medicine in medical school curricula. At a time when physicians are spending increasing amounts of time on administrative burdens, Nadauld said that freeing them from the weight of some of these burdens would give them more time to spend in educating themselves on genomics to the benefit of their patients.

While many Americans may not be familiar with the term “precision medicine,” they are aware that cancer treatments are much more effective today due to scientific advances, said meeting attendee John DeMuro, Federal Legislative Affairs Director for the Moffitt Cancer Center. “They may not understand the terminology, but they do know about DNA and genes,” he told Oncology Times. “I think people understand that if they get a cancer diagnosis today, their chances are much better than they were even 30 years ago.”

Peggy Eastman is a contributing writer.

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Looking for Patient Resources?

Oncology Times offers helpful handouts on a wide-range of oncology topics. Print, post, and share with colleagues and patients. Check out the resources here: http://bit.ly/2FE9g6K.

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