Privacy. Who Cares?

An automobile insurance company advertises they will drastically cut your rates if you allow them to put a device in your car that tracks your mileage and driving habits.  Yes, they want to track where you drive, how often you drive and what time of day or night you might be behind the wheel.  My reaction to this company’s offer to save me money was ‘no way!’ but in harsher terms.  I don’t want my insurance company monitoring me like that – when I come and go and how much I drive is solely my business.

So why would I feel any different about my health information?  I don’t want my health status monitored and tracked through the growing number of wearables and apps for our smart phones and tablets and other electronic devices.  There is a multitude of healthcare versions of this type of surveillance that many of us are using and not even aware our data is being gathered.

Take a look at what you are wearing and carrying these days.  I’m not talking about clothing, but the new wave of wearables and mobile apps – those electronic devices that are sold to us with the pitch they will make us healthier, smarter and even more engaged with our health care. Sometimes they are even given to us for free from our health insurance company or employers to use as a motivational tool. A few pharmaceutical companies have also gotten into the tracking game and their numbers will most likely grow.

Are you familiar with the Fitbit, Jawbone or Nike Fuel bands –those tracking devices you wear on the wrist? They sync to a computer and you can upload your activity data and manually input sleep times, eating habits, weight, and other miscellaneous fitness facts.  Part of their enrollment process is creating an account where your profile and data may be viewable by other users, depending on how you configure the privacy setting.

There are many more tracking devices being pushed onto us these day that aren’t as obvious as those wristbands that appear pretty harmless. After all, they might tell us what is done with our data when it is uploaded – it is all in the fine print of terms of use and service.  You know that fine print that few of us take the time to read even if our eyesight would allow us?  It’s important to note there are no regulations that cover the data gathered by these apps and trackers.

Have you seen the ads offering the latest and greatest multiple sclerosis apps that will make it convenient for us to manage our disease? These are programs that can be loaded on your mobile devices – your phones and tablets – and be with you all the time. According to the Pew Research Center, as of 2012 “19% of smartphone owners have downloaded an app specifically to track or manage health.”[i]  That number has to be larger by now.

I  looked at a few of these apps and even downloaded some on my iPhone but then thought better of it. A search of the iTunes store turns up a number of multiple sclerosis apps, and here is a sampling of screen shots:

Life and mS

Ms self

These all look good – they are free, attractively designed and those smiley faces make it look fun. But wait a minute … besides you and your computer or phone, who else ‘sees’ your data? It depends – and you have to read that fine print to get a better idea, if you can make sense of it.  In a recent USA Today article about privacy with wearable technology, they report “Symantec Corp., a tech security company headquartered in California, recently analyzed a variety of wearables and found that all hardware-based devices it examined were 100 percent trackable. One in five tracking apps also transmitted user-generated data, such as names, email addresses and passwords, without encryption.”[ii]

The article goes on to list a number of possible privacy risks with wearables, pointing out “Health-monitoring devices are among the hottest new wearables, capable of tracking blood glucose in diabetics, measuring heart rates and mapping sleeping habits. Some invite users to also self-track their moods, their toilet use and their sexual activity, and none of the info is protected by the federal Health Insurance Portability and Accountability Act (HIPAA) the way that info you share with your doctor is.”

Which brings me to the question if the apps being offered by the MS drug companies pose this same risk of exposure.  A while back, I uploaded the app MySidekick™, offered by MS drug maker Biogen, onto my phone.  It looks quite friendly and offers a lot of features – here are the screen shots from the iTunes store where this is available for free –

sidekick1

It also shows these opening screens for the app and you get a good idea it is very thorough.

sidekick2

But before I use it, I want to know what happens to my health data that I might put into MySidekick™. Through the terms I must agree to before use, I find the place to read all that small print and here is a very small sampling of their terms:

“We collect anonymous information about how MySidekick™ features are used. This is to find out what’s helpful and what’s not, so we can improve the App

We collect anonymous statistical information from analytics information providers such as, but not exclusively, Google Mobile App Analytics, for insight about user traffic patterns, how the App or user experience can be improved, and to customize the information provided to you based on your specific interests. This information is anonymous and is not used to develop a personal profile of you. This information may include, but is not limited to, the type of mobile device you use, your mobile device’s unique device ID, the IP address of your mobile device, your mobile operating system, the type of mobile Internet browsers you use, and information about the way you use the App’

And further in that small, fine print –

“By using the App, you are consenting to our processing of your information as set forth in this Privacy Policy now and as amended by us. “Processing” means using cookies on a computer/hand held device or using or touching information in any way, including, but not limited to, collecting, storing, deleting, using, combining, and disclosing information, all of which activities will take place in the United States.”

If I read this correctly, “as amended by us” means they can gather and use my data however they want. MySidekick™ is still on my phone, but not activated. Yes, I would like to understand the patterns of my MS and a mobile app is certainly convenient, but is it worth it?

I’ve gone long on this article so I won’t begin the discussion of how our health data from these apps can be used for financial gain and the huge amounts of money being made from selling data from mobile apps. Trust me, there’s lots being gained from us using those free apps.

I recently saw a different type of tool that I do like, offered by EMD Serono, another MS drug company.  Through their MS Lifelines website I can develop ideas for talking with my doctor, keep a sleep diary and monitor my symptoms.  These are trackers I would not hesitate to use – from their website you print the sheets and hand-write your answers and the personal information is never entered electronically.   There are no graphs or smiley faces but there is also no way they can gather information about what personal health problems I want to discuss with my doctor.

We worry about our health data being compromised or stolen, and everyone is sensitive to HIPPA rules of patient privacy. So why are we willingly giving much of that same healthcare data away to these mobile apps for it to be used in who knows what ways?  It’s time for regulations to be expanded to cover these apps and wearables, and continue the protection of patient rights we expect and deserve.

Wishing you well,

Laura

[i] http://www.pewinternet.org/fact-sheets/health-fact-sheet/. Retrieved March 28, 2015

[ii] http://www.usatoday.com/story/tech/2015/02/05/tech-wearables-privacy/22955707/  retrieved March 28, 2015

 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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