More Information Is Not Always Better: Pulling Consumers Into Active Choices About Testing

Posted by

Wendy Lynch

Posted 5/01/12 on the Altarum Institute’s Health Policy Forum

“I’m thinking of getting a full-body CT scan,” Jane said. “What do you think?” Here was a healthy, active 72-year-old with no specific symptoms considering an expensive screening test. When asked for a reason, she shared that strokes run in her family and a doctor told her that she might be able to see if there was a possible bulge in a blood vessel in her brain. Plus, while they were looking, the scan could see if there was some other problem.

When asked how it would affect her to know – do you think you would consider brain surgery if there was a problem? (probably not); what might you do differently if you knew? (I don’t know); do you know whether a bulge in her vessel would definitely cause a stroke? (not necessarily); she hadn’t really gone that far. She just thought she should know.

Jane isn’t alone. A large majority of Americans believe screening is a good idea (1). For cancer, 87 percent think screening is always or almost always beneficial (2). And a majority wants to know even if there is nothing you can do about it and it will never grow into something harmful.

When it comes to protecting our own health, it can seem like a good strategy to gather more information and monitor what is happening inside our bodies. The rationale is: if I detect a problem sooner, I am more likely to treat or cure it successfully. There are good examples of prudent screening tests that serve this purpose, such as finding and treating high blood pressure.

Indeed, our more-information-is-better mindset has led to the popularity of many screening tests, such as full body scans, pictures of calcium deposits in the heart, blood tests for ovarian cancer and MRIs to diagnose the cause of common knee or back pain. The public’s heightened interest in self-surveillance is fueled by direct-consumer advertising (3, 4) and news stories about unsuspected problems detected just in time, or untimely deaths that might have avoided “if-only.”

However, in the quest to be more informed about oneself, like Jane, we often neglect to think through what might happen after the test. For example, if you knew you were at greater risk of a stroke or heart attack, would you do anything differently?  If you knew you were at high risk for ovarian or breast cancer would you consider surgically removing these parts of you to avoid getting the cancer?  Knowing there is a risk doesn’t mean there is a clear course of action.

Also, what does the test result really mean? Take the example of prostate cancer screening (PSA test). After a certain age, men commonly have cancerous cells in their prostate gland. Yes, they have cancer. However, in many cases the cancer is slow growing, will not spread anywhere else, and will never kill them. Knowing about it will not change the quality or quantity of life (5). Is there a value to testing if the answer doesn’t necessarily mean you know more about the eventual outcome?

Probably more important, what is the likelihood that the information you gather will be true? There is a tendency for people outside of medicine to assume that tests used by doctors are definitive and accurate: the test will tell us what is wrong. We presume the test result is accurate BOTH in detecting a problem that exists and indicating a problem does not exist. But tests have varying levels of accuracy, some of them surprisingly poor. Getting the wrong answer has both cost and risk implications. Once again, PSA tests have a relatively high rate of false positives. Besides getting an unnecessary scare, for every three to five men treated unnecessarily for cancer, there will be one case of incontinence and one case of erectile dysfunction (5).

Yet discussions about issues like these have been largely absent between patients and doctors.

Which makes an announcement earlier this month all the more remarkable. Nine prominent medical associations revealed new recommendations for reducing the use of 45 screening and diagnostic tests (6). The announcement was noteworthy for several reasons:

1) Health care professionals were suggesting a broad shift in the practice of medicine. They were stating publically that some tests and treatments a) have little evidence of value, or worse b) might cause harm directly or indirectly from unnecessary treatments.
2) The story was widely covered by mainstream media and evening news broadcasts (7), giving it surprising visibility for a topic that is not particularly dramatic or attention-grabbing.
3) The announcement focused on consumers’ role.

The initiative that led to this announcement, called Choosing Wisely, states that its purpose is to “promote conversations between physicians and patients by helping patients choose care that is supported by evidence, not duplicative of other tests or procedures already received, free from harm, and truly necessary” (6).

Those familiar with medical literature on screening know that none of the Choosing Wisely recommendations are new. The US Preventive Services Task Force has never supported use of PSA screening tests or ovarian cancer blood tests because of the false positive rates and danger of unnecessary treatment (5).

What is new is the collaborative language regarding patient choice. Rather than simply defining professional dos and don’ts, the announcement focused on the limitations of tests and why patients might choose wisely not to get them in some circumstances.

Although subtle, this represents a significant shift toward acknowledging consumers as active participants rather than passive recipients of health care services. In this era where consumers are becoming more active as purchasers of care and self-managers of health conditions, it makes sense to encourage an understanding of both the limitations and risks inherent in tests and treatments.

As we look for ways to cut down on unnecessary spending in health care while improving health status and engaging consumers more actively in decisions, the Choosing Wisely recommendations are especially timely and valuable.
References

(1)   Oboler, S. K., Prochazka, A. V., Gonzales, R., Xu S., & Anderson R. J. (2002). Public expectations  and attitudes for annual physical examinations and testing. Ann Intern Med., 136(9),652-659
(2) Schwartz, L. M., Woloshin, S., Fowler, F. J., Jr., & Welch, H. G. (2004, January 8). Enthusiasm for  cancer screening in the United States. The Journal of the American Medical Association. 291(1),  71-78
(3) Lee, T. H., Brennan, T.A. (2002, February 15). Direct-to-consumer marketing of high-technology  screening tests. The New England Journal of Medicine, 346(7),529-31
(4) Kolata, G. (2002, May 27). Cheaper Body Scans Spread, Despite Doubts. New York Times
(5) Chou, R., Croswell, J. M., Dana, T., Bougatsos ,C., Blazina, I., Fu, R., et al. (2012, April 23).  Screening for prostate cancer: A review of the evidence for the U.S. preventive services task  force 2011. Retrieved  from:http://www.uspreventiveservicestaskforce.org/uspstf12/prostate/prostateart.htm
(6) Choosing Wisely. (2012, April 13). Five things physicians and patients should question 2011  (updated). Available from:http://choosingwisely.org/?page_id=13
(7) NBC Nightly News. (2012, April 4). Doctors call for end to 45 common medical tests.

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