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Digital Health Information for the Consumer : Evidence and Policy Implications

The Institutional Repository R. John Robertson. The Institutional Repository Stuart Ferguson. Key Concepts in Law Stuart Hannabuss.

Digital Health – Moving Health Forward with Memorial Healthcare System

The Story of Measurement Stuart Hannabuss. ISSN : Renamed to: Global Knowledge, Memory and Communication. Online date, start — end: — Copyright Holder: Emerald Publishing Limited.

Healthcare stakeholders are responding rapidly

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The investigators can obtain a limited data set that excludes direct identifiers eg, names, medical record numbers without patient authorization if they agree to certain security and confidentiality measures. Importantly, data sets from which a broader set of 18 types of potentially identifying information eg, county of residence, dates of care has been removed may be shared freely for research or commercial purposes.

This has been a serviceable framework for regulating the flow of PHI for research, but the big data era raises new challenges.

Digital Health Information for the Consumer: Evidence and Policy Implications by David Nicholas

HIPAA contemplated that most research would be conducted by universities and health systems, but today much of the demand for information emanates from private companies at which IRBs and privacy boards may be weaker or nonexistent. Additionally, removing identifiers to produce a limited or deidentified data set reduces the value of the data for many analyses. Moreover, the increasing availability of information generated outside health care settings, coupled with advances in computing, undermines the historical assumption that data can be forever deidentified.

It will be difficult to reconcile the potential of big data with the need to protect individual privacy. One reform approach would be data minimization eg, limiting the upstream collection of PHI or imposing time limits on data retention , 5 but this approach would sacrifice too much that benefits clinical practice.

Another solution involves revisiting the list of identifiers to remove from a data set.

See a Problem?

There is no doubt that regulations should reflect up-to-date best practices in deidentification. Therefore, expanding the penalties and civil remedies available for data breaches and misuse, including reidentification attempts, seems desirable.

Such information can come from well-known sources, such as apps, social media, and life insurers, but some information derives from less obvious places, such as credit card companies, supermarkets, and search engines. For example, non—health information that supports inferences about health is available from purchases that users make on Amazon; user-generated content that conveys information about health appears in Facebook posts; and health information is generated by entities not covered by HIPAA when over-the-counter products are purchased in drugstores.

HIPAA does not cover health or health care data generated by noncovered entities or patient-generated information about health eg, social media posts. It does not touch the huge volume of data that is not directly about health but permits inferences about health. For instance, the Family Educational Rights and Privacy Act of has no public health exception to the obligation of nondisclosure. The better course is adopting a separate regime for data that are relevant to health but not covered by HIPAA.

The latter has the appeal of reaching into non—health data that support inferences about health. Any new regulatory steps should be guided by 3 goals: avoid undue burdens on health research and public health activities, give individuals agency over how their personal information is used to the greatest extent commensurable with the first goal, and hold data users accountable for departures from authorized uses of data.

Rethinking regulation should also be part of a broader public process in which individuals in the United States grapple with the fact that today, nearly everything done online involves trading personal information for things of value. Improved public understanding of these practices may lead to the conclusion that such deals are in the interest of consumers and only abusive practices need be regulated.

Or it may create pressure for better corporate privacy practices. Some consumers may take steps to protect the information they care most about, such as purchasing a pregnancy test with cash. Shaping health information privacy protections in the 21st century requires savvy lawmaking as well as informed digital citizens.

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Digital Health Information for the Consumer: Evidence and Policy Implications

Corresponding Author: Michelle M. Published Online: May 24, No other conflicts were disclosed. All Rights Reserved. Save Preferences. Privacy Policy Terms of Use. Twitter Facebook Email. This Issue. Views 26, Citations 9. View Metrics. Lawrence O. Back to top Article Information. Centers for Medicare and Medicaid Services.

Accessed April 3, National Committee on Vital and Health Statistics.