My research over the last four years shows that their is a relationship between a set of identified descriptive characteristics and the choice to share or not share your medical information with a health care provider.
Why is this important? Public policy drivers encourage consumers to own and control their medical information. Legal regulation doesn't allow for this dynamic level of data management by consumers. Technical mechanisms to support seamless digital data management across disparate information systems does not exist.
Before we can get there - we need to understand why consumers will share or not share their health data.
My research study included a systematic review of the literature. Studies on consumer data sharing preferences of consumers show the following factors correlated with the sharing and withholding of medical information.
Factors Associated with Affirmative Health Data Sharing Preferences of Consumers
Age <40 years
Age >65 years
Children in household
Caregiver
Education
Employed
Income>100,000
Internet Use
Male
White, non-Hispanic
Hispanic
Regular utilizers of health care
Factors Associated with Negative Health Data Sharing Preferences of Consumers
Age 18-24 years – lack understanding
Age 40 to 65 – managing chronic illness or caregiver
Age >65 years – managing chronic illness or digital divide
Education <high school
Female
Black & Asian
Non-white, Hispanic & Asian
Healthy individuals
Low internet use
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