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Sjogren's Advocate pages are not handouts

It is important to choose clinician education materials wisely. It is usually not a good idea to offer clinicians a printout of a Sjogren’s Advocate page or blog post. These pages are not designed to be used as handouts. If your doctor is familiar with Sjogren’s Advocate and has expressed a positive opinion about the website, printing out a page might work, but it is usually best to stick with recommended material.

See the Clinician Handouts page to learn how to find, choose, and share Sjogren’s information. Sjogren’s Foundation resources, Printable Handouts for Clinicians, and articles cited on Sjogren’s Advocate are good options.

Choosing inappropriate handouts can backfire.

Doctors need to shield themselves from the onslaught of internet printouts that patients bring them. Clinicians are more likely to be receptive to a handout if you show that it is credible (state the source) and explain why it is pertinent. Printed material from an individual doctor’s website, including Sjogren’s Advocate, may be greeted with skepticism. Most clinicians have no idea who I am or why they should trust my work.

Skepticism about an individual doctor’s website is understandable. There are numerous “health influencers”, including doctors, who post misleading information on their websites. I have seen unethical doctors prey on vulnerable sick people, promising that they can cure their disease if they just follow their special diet/ recovery plan or take their expensive supplements.

Why you can trust the information on Sjogren’s Advocate

Sjogren’s Advocate is an educational website that relies on academic sources. I do not advertise or sell products. I created Sjogren’s Advocate to help patients achieve more timely diagnosis and better care.

The information on Sjogren’s Advocate is extensively researched and cited. The citations provide evidence to support what I am saying. They allow readers to access source materials such as articles from the peer-reviewed literature. Because I have a strong science background, I know how to read academic articles with a critical eye, taking into consideration study design, biases, and unfounded assumptions. Some of the articles that I cite contain flaws, but I use them when they provide solid evidence for the specific information that was cited. In other words, do not assume that I agree with every statement made in an article because I cited it. For example, some authors introduce Sjogren’s stating outdated information such as an unrealistically low prevalence of the disease. The “Sjogren’s is rare” idea does not take into account the large difference between diagnostic prevalence and actual prevalence.

As a longstanding Sjogren’s patient, medical educator, and patient advocate, I am in a unique position to understand both the unmet needs of patients and the constraints of overworked clinicians. Most doctors want to do their best to help patients. Suboptimal Sjogren’s care is a system-wide problem, not a failure of individual doctors. A website like Sjogren’s Advocate would be unnecessary if clinicians were offered adequate Sjogren’s education. Until this happens, Sjogren’s Advocate is here to help patients get the care they need.

Sarah Schafer, MD and Sjogren’s patient

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