Healthcare Big Data Debate: Public Good Vs. Privacy - InformationWeek

InformationWeek is part of the Informa Tech Division of Informa PLC

This site is operated by a business or businesses owned by Informa PLC and all copyright resides with them.Informa PLC's registered office is 5 Howick Place, London SW1P 1WG. Registered in England and Wales. Number 8860726.

Data Management // Big Data Analytics
11:55 AM
Connect Directly

Healthcare Big Data Debate: Public Good Vs. Privacy

Big data's role in healthcare could be hindered by government privacy regulations such as HIPAA, say experts at the Body Computing Conference. Who should own health data?

Apple's HealthKit and other smartphone health apps raise privacy, data ownership questions.
Apple's HealthKit and other smartphone health apps raise privacy, data ownership questions.

Comment  | 
Print  | 
Newest First  |  Oldest First  |  Threaded View
User Rank: Ninja
10/27/2014 | 4:49:30 PM
Tough call, but the middle ground here probably would reap the best results.  Being able to leverage healthcare data is meaningful in making crucial decisions. However, we need to learn to better respect privacy, especially in an environment were everythinig is collecting data and the level of access only continues to grow. Fortunately we seem to be addressing these issues at the same time that data usage is maturing. As a recent SAS poll shows there is still a long way for most organizations to grow. 


Peter Fretty
User Rank: Author
10/6/2014 | 5:04:47 PM
Re: 2 states of data
Information I found when researching Who Owns EHR Data? seems to point out that many patients are extremely willing to share data -- even data covered by HIPAA (such as ZIP code, condition, and age) with researchers who are seeking a treatment or want to prevent a disease, for example. That said, while I didn't look into this aspect, I would imagine the percentage of patients willing to release this information so a third-party can profit off their data is way, way lower. The same would go for advertising purposes, I'd imagine. And, despite legal protections, people have valid worries that they will or could be penalized if a health condition gets shared with an employer, potential employer, or other third party because of the merger of multiple, disparate data sources (such as credit card information -- that, perhaps, showed someone buying X, Y, and Z) and medical information.
User Rank: Ninja
10/6/2014 | 4:24:31 PM
2 states of data
Great points here about the need for balance of ownership for health data.  For one, having anonymous data is a great source for firms who use medical data for research purposes and other "good" intentions.  That being said, there needs to be a second layer of more in-depth information that belongs to individuals that can hopefully later be used in the health care system for more specific treatment and monitoring purposes.  The two should absolutely be kept separate, but sadly, I don't think device manufacturers or other application creators have figured out how to split the two to ensure the more comprehensive data is secured solely for users while the anonymous data is made available to researchers and third parties.  I'd love to hear any suggestions how a two-layer approach could be done, or if there is indeed a better way to keep the data separate while still making it available for each party.
AI Explosion Brewing in the Cloud for 2020
Joao-Pierre S. Ruth, Senior Writer,  1/3/2020
Modern App Dev: An Enterprise Guide
Cathleen Gagne, Managing Editor, InformationWeek,  1/5/2020
9 Ways to Improve IT and Operational Efficiencies in 2020
Cynthia Harvey, Freelance Journalist, InformationWeek,  1/2/2020
White Papers
Register for InformationWeek Newsletters
Current Issue
The Cloud Gets Ready for the 20's
This IT Trend Report explores how cloud computing is being shaped for the next phase in its maturation. It will help enterprise IT decision makers and business leaders understand some of the key trends reflected emerging cloud concepts and technologies, and in enterprise cloud usage patterns. Get it today!
Flash Poll