MyLymeData Stigma and Privacy in Lyme Disease Data: A project of LymeDisease.org 2.11.19.xlsx
Lorraine Johnson
10.6084/m9.figshare.7704167.v1
https://figshare.com/articles/poster/MyLymeData_Stigma_and_Privacy_in_Lyme_Disease_Data_A_project_of_LymeDisease_org_2_11_19_xlsx/7704167
<p></p><p>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. </p><p>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.<br></p><p></p>
2019-02-12 23:03:41
Lyme disease
Stigma
Privacy
MyLymeData
LymeDisease.org
Survey
Data use
Discrimination
HIPAA privacy rule
Health Care
Health Information Systems (incl. Surveillance)