What do Lyme disease and colorectal screenings have in common?  Not much at first glance.  But guidelines for both Lyme disease and colorectal screening were highlighted by the Institute of Medicine (IOM) in its report on creating trustworthy guidelines. The reason? Both have conflicting guidelines and there is a contentious battle about which guidelines are best.

In the case of Lyme disease, there is one primary difference between the guidelines of the International Lyme and Associated Diseases Society (ILADS) and those of the Infectious Diseases Society of America (IDSA). It is that the ILADS guidelines permit the exercise of clinical discretion and encourage shared decision treatment between the physician and patient. Shared decision making gives patients the opportunity to be informed of treatment options and to discuss those options with their physicians.

In colorectal screening, there are four approaches that can be used, including a colonoscopy and fecal immunochemical testing (FIT) for occult blood.  The United States Preventive Services Task Force (USPSTF) recently issued guidelines that acknowledge all four approaches. The big news is that rather than selecting a favorite, the USPSTF recommends that a physician discuss the options with the patient and for doctor and patient to jointly determine the best approach.

A recent article in JAMA, explains the significance:

[T]he USPSTF recommends shared decision making, a process in which physician and patient share information and reach a consensus about what screening test is best for the patient. In shared decision making, the choices do not necessarily have similar outcomes or equivalent efficiency. For the physician, sharing information means providing access to a description of the benefits and harms of the alternatives. For patients, this means describing how they value the strategies and their potential outcomes or declaring their willingness to complete the screening process. To be an equal partner in this conversation, patients must learn about the strategies and their consequences. The physician could describe them or send the patient home with a decision aid to review in advance of a subsequent conversation about screening. This embrace of shared decision making for choosing a screening test is a pivotal step forward for the task force.

The fact that this key government agency embraces shared decision making is very important to all patients—but particularly to those with Lyme disease.  The heart of the controversy in Lyme disease is whether “those most affected” by healthcare decisions should have a say and be able to choose among treatment options.

This is a critical time because the IDSA is in the process of revising its Lyme guidelines. In their present form, the IDSA guidelines deny sick patients access to care and preclude them from treatment decisions that are vital to their quality of life. The current guidelines go a step further actually. They exclude many treatment options that could help patients get well. In order to provide patients with the treatment options in the first place, patients who represent those affected need to be on the guidelines panel. Unfortunately, so far in the process the IDSA has turned a deaf ear to the needs of patients.

Still, the fact that the USPSTF has adopted shared decision making is a step forward for patients everywhere and increases the pressure on all organizations to include patients affected by the disease in guideline development and treatment choices. We hope the IDSA is listening to the steady beat of the drum of progress closing the door on paternalism.

This blog is one in a series about the IDSA revision process.  My previous post focuses on the time frame for the process—two to five years.

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.  If you have not signed up for our patient centered big data project, MyLymeData, please register now