LYMEPOLICYWONK: Working to improve the diagnosis of Lyme disease
The Society to Improve Diagnosis in Medicine (SIDM) is a non-profit organization that focuses on the problem of diagnostic error. It works with patients and healthcare providers to improve the accuracy and timeliness of medical diagnosis.
Diagnostic error is a topic that the Lyme disease community cares about deeply!
LymeDisease.org has recently become a “patient partner” with SIDM, with a shared goal of finding ways to make prompt and accurate diagnosis a reality for people with tick-borne diseases.
The current issue of ImproveDX, SIDM’s bi-monthly newsletter, includes an article entitled “Diagnosis at the Center of the Lyme Wars.”
Written by editor Susan Carr, it recaps the medical controversy regarding Lyme disease, and notes that difficulties in diagnosing Lyme are central to the problem.
Then, it points to our MyLymeData project as an example of how the patient community is working to accelerate progress in the diagnosis and treatment of Lyme disease.
(If you’re not familiar with it, MyLymeData is a way for individuals with Lyme disease to register their own experiences with the illness, including symptoms, diagnosis and treatment. The goal is to find patterns—what works and what doesn’t—which could lead to finding more effective treatments, and ultimately, a true cure.)
I encourage you to read the Lyme article on page 1 of the newsletter, and then scroll down to read more about patient partners on page 6.
Lorraine Johnson, JD, MBA, is the Chief Executive Officer of LymeDisease.org. You can contact her at firstname.lastname@example.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.