Sharing & Withholding Medical Information at the Point of Care

in #privacy7 years ago (edited)

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

Follow me to learn why these concepts are important to privacy, security and new Blockchain technologies that allow for ledger-audit systems that track creation, collection, use, changes made to data, deduplication, re-use of your protected health information.

@phdmoon

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and that is my goal to keep myself healthy.. :)

yap i also agree with you.. well said..
nice post

I read that there is $850B in waste estimated in healthcare. How can blockchain help reduce this waste?

Of course this waste ends up conveniently in the pockets service providers who have little incentive to change.

Can you talk about the current state of security in health data?
What is the impact of having poor privacy of our health data? I'm concerned if people are numb to the need for privacy and how we can be informed on its impact if we don't do something about it now.

The study I led measured the of relationship between security, privacy and consumer data sharing preference. Privacy had a weak relationship on the data sharing preference. Security had a strong, statistically significant relationship - this is because consumers perceive safe, secure data to be private. Blockchain can help because it has audit functions that are more granular than those available in conventional data security features available today in healthcare technology.

Wow great prediction on my health.

Can you talk about the current state of security in health data?
What is the impact of having poor privacy of our health data? I'm concerned if people are numb to the need for privacy and how we can be informed on its impact if we don't do something about it now.

This is a great question and a debate among privacy experts. There are a few issues at stake here: 1) your data is used for many activities in health care that you as a consumer have no knowledge, 2) those activities may lead to you as in individual being identified as an over utilizer of health care services and 3) identification of over utilization is a sign of increased health risk which may indicate that you are a poor candidate for health insurance benefits, certain treatments or you may be targeted for programs that aim to decrease or stop your over utilization of health care resources. So, poor privacy constraints - or at least lack of transparency for how your data is used, for what purpose, for how long and which outcome measurement is the real risk.