MyLymeData Stigma and Privacy in Lyme Disease Data: A project of LymeDisease.org 2.11.19.xlsx

Between November 5, 2018 and February 2, 2019, LymeDisease.org conducted a survey of over 1,900 patients enrolled in its IRB approved MyLymeData patient registry on the topic of privacy, data use, trust, discrimination and stigma. The survey showed that patients face disrespect and discrimination both within and outside the healthcare system. They are worried that their healthcare data might be used to discriminate against them by employers or insurers. Over 75% of respondents were concerned about the privacy of their healthcare data generally.

Roughly half of respondents reported being concerned about the use of their health data by the government (56%) and pharmacies (49%), with a higher number expressing such concern about drug company data use (60%). Over 80% were concerned that an insurer might use their healthcare data to deny coverage in the future as a pre-existing condition. Approximately half of those employed (48%) were concerned that employers might use healthcare data to limit their career opportunities.