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

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Healthcare Big Data Debate: Public Good Vs. Privacy
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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.
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
10/27/2014 | 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

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