Did you know that a goal of Healthy People 2020, a collaborative effort of a number of federal agencies, is to increase shared decision-making in healthcare? Although it is not obvious, shared medical decision-making is at the heart of the conflict in Lyme disease.

As most Lyme patients know, there are two guidelines for the treatment of Lyme disease. One set was developed by the Infectious Diseases Society of America (IDSA), and the other was developed by the International Lyme and Associated Diseases Society (ILADS).

The main difference between the two sets of guidelines is that the ILADS guidelines provide patients with treatment options and provide for shared decision-making with their healthcare provider.  This means the physician discusses different treatment approaches available with the patient and together they come up with a decision that reflects the risks and benefits associated with treatment and the circumstances and values of the patient. In the IDSA guidelines, patients are neither informed about treatment options nor provided with any say in selecting treatment options.

Another key difference in the two guidelines is that the ILADS guidelines included a patient on the panel, while the IDSA guidelines did not.  The IDSA guidelines are currently being revised and the issue of patient involvement has been at the forefront of patient concerns.  The IDSA initially selected as a representative of patients with Lyme disease someone who had never had Lyme disease and came from a state where Lyme disease essentially does not exist.

Led by LymeDisease.org and the national Lyme Disease Association, over 80 patient groups signed onto a letter expressing alarm at this action. This was followed by a letter from members of Congress admonishing the IDSA for not adhering to the Institute of Medicine’s recommendations. As a result of this public pressure, the IDSA has expanded the panel to include more “patients.” However, the group refuses to disclose any critical details–including who these people are and whether any of them have chronic Lyme disease. How authentically can they “represent” us under these circumstances?

The reason why patients need a seat at the table is to preserve patient choice and to make sure that medical decision-making includes their perspective. This is an issue of fundamental civil rights recognized by the Institute of Medicine–that “those affected” should have a say.  So why does the IDSA object and refuse to play by the rules?

Sometimes we hear the IDSA say that patients should not be permitted to dictate decisions, but shared decision-making is not about patients taking control. It is about patients and physicians deciding among the options what option is acceptable to both the patients and the physicians.  A recent article in Medicine, Healthcare and Philosophy explains this critical distinction:

Informed decision-making is a process that implies that the physician’s knowledge is transferred to the patient, who then has the knowledge and preferences necessary to make a decision. The patient is thus the sole decision maker, whereas in SDM (shared decision-making), the physician and the patient mutually inform each other to reach a common agreement on the decision to implement (Moumjid et al. 2007, p. 541).

The reason why shared decision-making is a goal of People 2020 is simple. Research shows that shared medical decision-making improves health outcomes across the continuum of care. Unfortunately, only about half of adults report always being involved in health-care decisions. A study analyzing Health Information National Trends Survey (a national survey conducted by the National Cancer Institute) found that shared medical decision-making was at least two times higher among adults:

• who “always” versus “usually/sometimes/never” take health information to doctor visits, and
• who were “completely/very confident” versus “somewhat/a little/not confident” about finding health information

So the next time you hear criticism of patients who gather information from the internet to discuss with their doctors, remember that informed, prepared patients are more likely to have a say in their care.

At LymeDisease.org, we try to provide patients with the information and tools that patients need to foster shared medical decision-making.  You might check out our Lyme Disease Symptom Checklist, which asks people who suspect they may have Lyme disease about their exposure, whether they had a tick bite or rash and symptoms suggestive of Lyme disease. People who complete the checklist can then print out a copy of their responses to give their physician to help inform the conversation about their diagnosis.

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.