Internet Privacy: Patients and Online “Medical Detectives”

Internet users who search for symptoms of various ailments should be aware of how to protect their privacy when looking for information.

One frequented website includes CrowdMed, a site that touts "crowd-sourced medical diagnoses." The site was started by Jared Heyman, who said the inspiration was his younger sister, Carly, who spent three years with a difficult, chronic undiagnosed medical condition.

CrowdMed works by getting so-called "medical detectives" from all over the world to weigh in after submitting your case and answering an in-depth patient questionnaire.

Once the case is uploaded to the site, it gets "exposed to our medical detectives," Heyman said.

Those "detectives," Hyman said, include medical students, doctors, retired physicians, nurses, acupuncturists, nutritionists and chiropractors. Their opinions are consolidated into a report.

NBC4's health team used the site to see how the search for a diagnosis worked. The team found medical records with pseudonyms at the top of the charts, but in some cases, real names, addresses and personal information was listed.

Heyman told NBC4 that it's the patient's responsibility, not the website's, to handle personal information.

"We have instructions that say, 'Please do not (include) any personal identification or information,'" Heyman said.

Warnings appear in a number of spots on the site, including the frequently asked questions section, where it says "it is the patient's responsibility not to divulge any personally identifiable information."

The site cannot edit patient records, so it asks patients to hide or blackout anything with their name on it.

Currently, no independent statistics reveal how often CrowdMed helps people get a diagnosis. The service costs money, but the company recently started offering free trials. CrowdMed does not violate any laws.

Users who want to protect their privacy should take responsibility and assume no website will do it for them.
 

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