Healthcare // Mobile & Wireless
Commentary
6/17/2014
12:00 PM
Alison Diana
Alison Diana
Commentary
Connect Directly
RSS
E-Mail
50%
50%

When Is Anonymous Data Really Anonymous?

Confusion over the standards for anonymous data, or deidentification of data, damages adoption of mHealth apps, curtails innovation, and could generate needless extra laws.

That's because organizations are trying to sell to, not harm, consumers -- and due to the many existing laws that protect individuals, their freedoms, and privacy, he adds.

"It's feasible -- since wearable technology using sensors is in people's phones, cars, or homes -- you'll be able to figure out something about somebody's health condition," says Castro. "It's more likely your neighbor knows already. Even if [app developers] could make an educated guess they're not going to sell that information to employers because that information is prohibited by law. The concern is there: It's a legitimate concern, that somebody will make an adverse decision because of healthcare, but more realistically it'll be the result of interactions. That's more likely to be the cause of one of these adverse actions than wearing a Fitbit."

Indeed, the advent of wearables and mHealth apps does not require a separate flurry of legislation, he says. Existing laws, perhaps with some amendments, adequately protect patients and their information, the Center wrote in a letter to the Federal Trade Commission this month. In addition to HIPAA, laws such as the Americans with Disabilities Act (ADA), Genetic Information Nondiscrimination Act (GINA), Fair Credit Reporting Act (FCRA), and Employee Retirement Income Security Act (ERISA) protect consumers and patients, the organization said.

With more participants from across the wellness spectrum, mHealth data could lead to vital insight, treatments, and perhaps cures. Until all app developers speak the same language and operate under the same rules, some patients could find deidentification and anonymity hurdles too high to clear.

Most IT teams have their conventional databases covered in terms of security and business continuity. But as we enter the era of big data, Hadoop, and NoSQL, protection schemes need to evolve. In fact, big data could drive the next big security strategy shift. Get the 6 Tools To Protect Big Data report today (registration required).

Alison Diana has written about technology and business for more than 20 years. She was editor, contributors, at Internet Evolution; editor-in-chief of 21st Century IT; and managing editor, sections, at CRN. She has also written for eWeek, Baseline Magazine, Redmond Channel ... View Full Bio
Previous
2 of 2
Next
Comment  | 
Print  | 
More Insights
Comments
Newest First  |  Oldest First  |  Threaded View
Page 1 / 2   >   >>
Alison_Diana
50%
50%
Alison_Diana,
User Rank: Author
6/20/2014 | 2:22:00 PM
Researcher Perspective?
Thanks, @RightPatient. I wonder what researchers think about this topic: Do they think lack of transparency and standardization holds back some usage? Most people I've spoken to say they don't mind their information being used for the good of many, as long as it cannot be traced back to them as an individual. 
RightPatient
50%
50%
RightPatient,
User Rank: Apprentice
6/20/2014 | 9:45:19 AM
Re: Imagine the implications of non de-identified data across HIEs
Thank you so much for your feedback Alison. This is such a fascinating topic, we would welcome any follow up articles you can write about this topic as your editiorial calendar permits!
Alison_Diana
100%
0%
Alison_Diana,
User Rank: Author
6/19/2014 | 10:17:48 AM
Re: Imagine the implications of non de-identified data across HIEs
Thanks so much, @RightPatient, for your kind words. It's the kind of article I enjoy writing because it's a topic I think we all have to think about. It is, after all, affecting us and will continue to do so; if we don't figure out the details soon, the status quo will continue and I'm not so sure that's a good thing. 

Your question about HIEs is intriguing. As far as I know, deidentification is deidentification and the lack of standards crosses all lines -- from apps to HIEs to EHRs and beyond. So the same confusion that I (hopefully) described in this article similarly occurs in health information exchanges and electronic health records -- with far more dangerous repercussions, since these databases DO contain both Social Security numbers AND real patient data, such as names, addresses, ages, and potentially embarassing information including STDs, drug abuse, contagious diseases, alcoholism, or extra-marital affairs. However, HIEs and EHRs ARE covered by HIPAA (and perhaps other laws regarding privacy?), because of this information, so I would think they must therefore meet the government's deidentification guidelines (which I linked to in the article). These comments are just my musings on the topic; I don't know and have not spoken to anyone about this aspect of deidentification and anonymity. I think I will do some research and follow up in another article at some point, if you think that's warranted?


For sure, though, the data within HIEs is deidentified and mined. There are startups founded specifically to mine healthcare data from various sources, differentiating themselves on their turnaround time (as in the newness of their data), the variety of data, and size of their data pool, for example.
RightPatient
50%
50%
RightPatient,
User Rank: Apprentice
6/19/2014 | 8:50:06 AM
Imagine the implications of non de-identified data across HIEs
Great article Alison. Was just thinking outside of the healthcare app box and how this conundrum could effect the rising use of HIEs to advance population health initiatives. What guidelines are the HIE initiatives following to ensure that data exchanges strip personal, identifiable data from health records when providers look to mine that data for analytical informaiton? Or does this not apply to HIEs?
Alison_Diana
50%
50%
Alison_Diana,
User Rank: Author
6/18/2014 | 9:05:29 AM
Re: Security
That's true, @Henrisha. I'd think the data from mHealth or wearables is of less interest to hackers, since it does not usually include saleable info like Social Security or insurance numbers. That's the data that's valuable, selling for $50-$60 per record, from what healthcare and security execs told me. 
Henrisha
50%
50%
Henrisha,
User Rank: Strategist
6/18/2014 | 6:27:34 AM
Re: Security
I agree with you. When data is sold, it's done so in an obviously much more controlled manner and environment. When it's stolen, everything's a mess and the actual culprits are difficult to hold accountable because most of them don't end up getting caught and brought before the law.
Alison_Diana
50%
50%
Alison_Diana,
User Rank: Author
6/17/2014 | 3:13:24 PM
Re: Toxic culture
It really is a shame because it's definitely holding people back from using apps they want to leverage for their own health. Standardizing on what deidentification means and equipping consumers so we can decide to only use apps that meet a preset deidentification standard would, I bet, encourage more people to use these apps and wearables. As Daniel told me, before there were cryptography standards, organizations could say their data was encrypted. It may have had some level of encryption, but that didn't mean it was necessarily secure. We need to have the same thing with deidentification - at least a baseline level to assure users, developers, researchers, etc., that a certain minimal level has been met.
David F. Carr
50%
50%
David F. Carr,
User Rank: Author
6/17/2014 | 2:24:23 PM
Re: Security
I don't know about time limits. Trending data over time is one of the most basic forms of analysis.
Alison_Diana
50%
50%
Alison_Diana,
User Rank: Author
6/17/2014 | 2:19:03 PM
Re: Security
That's a good start and could address some privacy and consumer advocates' concerns. That said, I don't know that healthcare researchers, marketers, or other organizations buying this research are interested in older data, even in the 'value' it provides as helping paint a more complete picture of an individual. While it may be helpful to some extent, the information collected via personal health devices and apps doesn't necessarily lend itself to historical research -- or does it? Would it be important to researchers that someone was, for example, a vegeratrian for a year, and then wasn't? Or someone who never walked more than 1 mile a day is now walking at least 3 miles daily? I don't know... 

I like the idea of giving a mandated timeframe for data collection and "ownership." The fact that someone once used an app shouldn't mean a developer or other company then has the "right" to hold onto that data into perpetuity, if they choose to do so. 
Lorna Garey
50%
50%
Lorna Garey,
User Rank: Author
6/17/2014 | 2:14:17 PM
Toxic culture
It's unsurprising that government has been slow to promote deidentification given the political climate. Can you imagine the spin that ACA critics would put on the concept -- that is, if this administration were to explain the concept in terms simple enough for them to comprehend?

It's a shame, too, because all that data could indeed fuel the analytics engine and power advances that would benefit everyone.
Page 1 / 2   >   >>
Register for InformationWeek Newsletters
White Papers
Current Issue
InformationWeek Government Tech Digest Oct. 27, 2014
To meet obligations -- and avoid accusations of cover-up and incompetence -- federal agencies must get serious about digitizing records.
Video
Slideshows
Twitter Feed
InformationWeek Radio
Archived InformationWeek Radio
Join us for a roundup of the top stories on InformationWeek.com for the week of October 26, 2014 and for the incredible Friday Afternoon Conversation that runs beside the program.
Sponsored Live Streaming Video
Everything You've Been Told About Mobility Is Wrong
Attend this video symposium with Sean Wisdom, Global Director of Mobility Solutions, and learn about how you can harness powerful new products to mobilize your business potential.