Lyme Disease Stigma and Privacy Survey Results The Lyme community is filled with untapped data about a disease that is commonly misunderstood; however, Lyme patients want the assurance that their privacy is being protected and that their data is not being misused.

By Lorraine Johnson, JD, MBA

78% of Lyme disease patients worry about healthcare data privacy L recently submitted comments to the Office of Civil Rights (OCR) about proposed changes to the Health Insurance Portability and Accountability Act (HIPAA).

These changes would diminish patient privacy protections and could possibly expose Lyme patients to a greater risk of stigma, discrimination, and disclosure of their health information without their knowledge or consent. (You can read the actual comments here.)

Before we developed or submitted our comments to the OCR, we asked Lyme patients what they thought. In this case, we wanted to know how much Lyme patients care about their medical privacy. Do they worry that someone might misuse their healthcare data? Do they face stigma or discrimination because of their illness? Who do they tell about their Lyme disease?

MyLymeData Surveyed Patients on the Topic of Privacy

To determine this, we surveyed more than 1,900 patients enrolled in the MyLymeData registry on the topic of privacy, data use, trust, discrimination, and stigma between November 5, 2018, and February 2, 2019. The results showed that patients face disrespect and discrimination both within and outside the healthcare system. They also worry that healthcare data might be used against them by employers, insurers, and other healthcare providers. Seventy-eight percent of respondents were concerned about the privacy of their healthcare data, generally.

One respondent sums up the things that patients worry about, saying:…..Join or login below to continue reading.

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