A new article in Health Affairs, Evidence that Consumers are Skeptical About Evidence Based Health Care, draws an important conclusion: “Clearly, consumers will revolt if evidence-based efforts are perceived as rationing or as a way to deny them needed treatment.” Bingo! This is why patients with Lyme disease are in revolt.

The authors assume the high degree of consumer skepticism their study revealed results from ignorance about evidence-based medicine (EBM).   The survey was funded in part by the National Business Group on Health, which represents large employers’ perspective on national health policy issues.  As you probably know, in the US employers provide insurance to 50 million US workers.  Many self insure.  In short, cost control is a major motivator for this group.  The study notes that support of consumers is essential to improving quality of healthcare and containing costs.

The authors assume that EBM is based solely on evidence, which, unfortunately is not true.In fact, according to McAlister the majority of guideline recommendations are not supported by high level evidence.   Good guidelines do not make firm recommendations where science is uncertain.  But many guidelines fill in the poor evidence base with expert opinion and that is where the trouble begins—because opinions are formed and shaped by the values of those making them and those values may not be the same values that patients hold.

Values of stakeholders in health care differ.  Insurers care about short term cost control; drug companies care about expanding the size of their markets (through expanded disease definitions) and about providing long courses of treatment (think cholesterol medication for life) rather than cures; medical societies care about enhancing the reputation and reducing liability exposure of their members; researchers with industry ties care about the hand that feeds them, and so forth.  Patients care about preserving treatment options, improving their quality of life, and treatments that “cure”.   And, they do not care to hand those decisions over to people who have not earned their trust and do not bear the consequences of treatment failures.

The author’s believe that part of the problem is that patients rely on their doctors too much.  Patients select their physicians and if they are unhappy with them, they can fire them or if harmed, they can sue them.  Guideline panels, however, are not liable to treatment failures when guideline recommendations fail.  The issue is not misplaced trust—it is accountability.

The author’s assumption that consumer skepticism of EBM is founded in ignorance misses the point.   Patients don’t distrust evidence; they distrust those who spin evidence.  There is a clash of values between insurers, drug companies, and patients.  Let’s take a look at the results of their patient survey and translate them into “what patients want and need.”

…When focus-group participants were told that providing beta-blockers for heart attack patients represents the accepted standard of care, but 25 percent of patients do not receive them, participants immediately offered justifications for the lack of treatment: the patient was “allergic,” the hospital was “too poor” to provide the drugs, or the doctor knew that the patient needed a different medication.

This means patients believe individualized medical care is required and accounts for most variation in care.

…“Using medical guidelines sounds like…your doctor can’t give you other treatment without approval. It’s taking your choice away and putting the decision in somebody else’s hands.”

This means patients should have a voice in their health care decisions and treatment options should not be taken away.

…Participants were more inclined to trust their own and their physicians’ judgments of quality, instead of relying on guidelines that might “discriminate against doctors who give you better care” and “cripple medical advantage. It’s thinking outside the box that helps you find a treatment that works. It’s not always rule of thumb.”

This means innovation occurs because physicians do not follow rigid rules and patients need that because what should work doesn’t always work.

…Some also worried that doctors could use guidelines to protect themselves from potential lawsuits by invoking them to deny care, especially new or innovative care that patients consider necessary. One participant said, “This is just a way for doctors to say, ‘I’m following the national guidelines, so you can’t sue me if something goes wrong.’”

This means guidelines should not allow doctors to deny care without responsibility for what happens to the patient.

…The consistent finding that consumers prefer subjective information from friends and family about selecting doctors and hospitals to objective information about performance and outcomes shows how difficult it is to shift toward an evidence-based approach to making health care choices.

This means that patients trust recommendations from people whose values are aligned with their values.  They do not trust information about performance and outcomes put together by an unknown committee with an unknown agenda (cost reduction, drug sales etc).

…Effective communication with and support of consumers is essential to improving the quality of health care and containing health care costs. Clearly, consumers will revolt if evidence-based efforts are perceived as rationing or as a way to deny them needed treatment.

This is why patients with Lyme disease are in revolt.  The IDSA guidelines deny patients needed treatment. 

 You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson at lbjohnson@lymedisease.org.