Personalized medicine by the numbers

WASHINGTON, D.C.—To readers of DDNews the term “personalized medicine” is a commonplace occurrence found routinely as part of our editorial coverage. But to the potential beneficiaries, John and Jane Q. Public, it’s only a vague promise, positive but not well understood.

This is the major take-away point from a telephone survey (landline and mobile phone) of 1,024 American adults (18 and older) conducted by KRC Research on behalf of the Personalized Medicine Coalition. The survey was conducted March 5-16, 2014. Interviews were conducted in English. The margin of error for the total sample is plus or minus 3 percentage points.

The survey found that a large majority of respondents—62 percent—have not heard of personalized medicine but react positively when it is described to them. Among those who have heard the term, only 2 in 10 feel very informed. Only 11 percent say their doctor has discussed or recommended personalized medicine to them.

Most respondents feel excited about the potential benefits of personalized medicine, including choosing a treatment that is most likely to work for them and the potential to prevent illness.

A large majority also recognizes the value of these technologies and believes that they should be covered by insurance.

After hearing a description of personalized medicine, two-thirds of the surveyed population said their reaction was mostly positive, close to a third (28 percent) said neutral, and only 2 percent said mostly negative. In focus groups conducted in 2012, consumers told KRC Research that the reason they feel positive about personalized medicine is because it is proactive, patient-centered, and helps streamline doctor/patient decision-making.

In KCR’s 2012 consumer focus groups, participants were shown examples of current uses for personalized medicine and asked for their thoughts and reactions. The examples proved to be a key way to educate people by making abstract concepts real to the participants.

Most prospective consumers (69 percent) are interested in learning more about how personalized medicine works; 18 percent are not too interested and 9 percent are not at all interested in learning more.

Consumers in both the survey and focus groups had a wide range of questions: How effective is personalized medicine? What is the success rate, track record, history? How accurate are predictions? What are the negatives—are there risks or side effects? How much does it cost? Will insurers cover it? How will the test or procedure be performed? What does it involve? What are the advantages or benefits? Could I benefit? How will data be used?

Should their doctor recommend personalized medicine, a large majority (77 percent) say they would be very (37 percent) or somewhat (40 percent) likely to have a diagnostic test to use for developing a personalized prevention or treatment plan.

The idea that personalized medicine can provide useful prevention and treatment information, help avoid or reduce side effects, avoid trial-and-error medicine, and give more control to prevent or treat illness were compelling benefits to the survey universe. Unaided, consumers said they felt excited about the potential for individualized testing and treatments, prevention and early detection, and the ability to predict and have better information for decision-making.

When given a list of five potential benefits, large majorities felt all five were major benefits for them personally. Consumers were particularly optimistic about the possibility of having information to help choose a treatment that is most likely to be effective and gaining more personal control to prevent or treat illness. In KRC focus groups, consumers discussed the importance of having a doctor who is well informed about a patient’s individual health, as well as that of their family. Consumers said they would appreciate having an added tool to help in difficult decision-making in partnership with and under the guidance of their personal physician.

When read a list of concerns, access and affordability—fear that insurers won’t cover it (69 percent) or patients can’t afford it (67 percent)—topped the list. Other major concerns are that the information could be used to deny coverage for a treatment a patient wants (55 percent) and personal information could be used against a patient (47 percent).