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Navigation of Informed Consent and its Considerations – Janet’s thoughts on Patient Privacy
So far today, I have had to agree to accept terms of use or acknowledgement of privacy practices for two different websites to access information and the day is young. Want to sign into your television subscription service? Accept our term of use. Searching for something on a website, accept or reject cookies (if they are Double Stuff Oreos-I’ll accept, but I digress-wrong cookies)! Data collection isn’t a new concept; it began as soon as cavemen learned to tally information. As a tool, data allows us to gather and organize information to identify strengths, weaknesses, and trends for decision making. As community members, we are frequently asked and often compensated to share our thoughts via surveys, evaluations, advisory boards and even research. Our valuable input has contributed to closing knowledge gaps that drives innovation, services and ultimately new products that have transformed care.
“Data is King” as a phrase, contributed by Google’s Research Director, Peter Norvig, popularized in the 2010 era, revolutionized data collection. What began as rough cave scratches has become an industry with new college majors and regulations. Our PI (personal information) or PHI (protected health information) is valuable to multiple industries and can be drivers of big business decisions that companies will pay big money for. Regulations such as HIPAA enacted in 1996, provide standards specific to privacy, security and notifications if there is a breach.
For those of us who have participated in research studies, we are familiar with the term, “de-identified” where personal information is stripped down to a corresponding number devoid of all health information and protected from personal identification. Without the generous contribution of many in this community who have participated in these studies, we wouldn’t have the products and quality of life many of us now enjoy.
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