When Is Anonymous Data Really Anonymous?

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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.

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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!

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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.

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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