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One Letter Makes a Difference: Avoiding Online Research Pitfalls

One Letter Makes a Difference: Avoiding Online Research Pitfalls
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Published on August 16, 2021

Online Research Pitfalls and How to Avoid Them

When a newly diagnosed leukemia patient we know did a quick online search for her condition — chronic myelomonocytic leukemia (CMML) — she was served up information about a related condition: chronic myeloid leukemia (CML). The patient eventually got personalized information on her condition from her doctor, but only after experiencing some confusion about what her treatment might entail. Our point? As online information about cancer proliferates, risks of misunderstanding also increase. Patients and their care partners should do their research carefully and consult with their medical team to validate what is found.

Here are a few tips for making sure your online research yields accurate and timely information:

Always start with your medical team. When discussing your diagnosis with your doctor, don’t be shy about asking for clarification of abbreviations and medical terms that are used. There is nothing wrong with doing research on your own – you just want to make sure that you are looking for the right information!

When using the search function on a website, spell out the name of the condition you are searching for rather than using the abbreviated form. There are so many cancer conditions that have very similar abbreviations (like CML and CMML) that being very specific about your search will cut down on inaccurate results.

Consider the source of your information carefully. Aside from your trusted medical team, there are a select few national and international organizations that provide information online that are considered the gold standard for accuracy and timeliness. Start there. These sites can also refer you to other reputable resources for your specific cancer type. These include:

Check the publication dates of articles you find, as well as the authors and their credentials. The science of cancer diagnosis, testing, and treatment is changing so rapidly that information from even a year ago may already be outdated. Look for the most recent publication dates and check the medical affiliations and accolades of the writer.

Using more than one credible source of information is best — we call this triangulation. With two or three sources of information about your condition, treatment options, etc., you may uncover areas where there doesn’t appear to be a consensus. You can discuss any questions that arise with your medical team.

We are blessed to be living in a time when information about medical conditions and their treatment is widely available online. The key to accessing and using this information is to find accurate and relevant information amid a sea of less-than-credible resources.

~Esther Schorr and Steve Buechler

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