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Whose Data is it Anyway?

by John Moore | February 13, 2012

Chilmark Research tends to shy away from the thorny, nearly intractable issues of privacy and security of Personal Health Information (PHI) (we’ll leave that to the lawyers and policy wonks to figure out). However one thing is very clear: As we continue to conduct more and more of our daily activities, both business and personal, via some form of digital device all those little messages, those bits and bytes of data we create are being collected by someone, somewhere to create a more accurate profile of us. In my own case, how else would my favorite site for weather (weatherunderground) know I’m an outdoor enthusiast and have a banner ad for backcountry?

Despite our reluctance to tread into this domain, it is one of extreme importance.  The healthcare industry is undergoing a digital transformation at roughly the same time as consumers increasingly use an ever wider set of digital tools from social media (twitter, facebook, etc.) to text messaging services (txt4baby) to various health & wellness apps on smartphones and even biometric sensors (Nike+, fitbit, Withings, etc.). We’re not sure where all this will lead but at the very least, the public needs to gain a better understanding of how their digital bits and bytes are being used and maybe begin to think twice as to how and where and with whom they share their PHI.

Today, we found one such educational tool, an animated video by Michael Rigley which is quite powerful using MMS as an example.

If this is what the telecoms can now do with a simple MMS, just imagine what they might do with some of that rich health-info you may be communicating.

As an aside, Dr. Searls is doing some interesting work at Harvard Law’s Berkman Center on the concept of VRM, (Vendor Relationship Management). Much of the principles he outlines could easily be transposed to the healthcare sector and the management of one’s PHI.

5 responses to “Whose Data is it Anyway?”

  1. John – great topic – and for something a little further down the scarier scale – how about the somewhat stunning revelation last July that sexual activity tracked by Fitbit was showing up in Google search results. Yikes!


  2. […] Article John Moore, Chilmark Research, 13 February 2012 […]

  3. civisisus says:

    it SOUNDS ominous – but is it, really?

    My digital trail is NOT me – who I am now, who I will be – however much the acquirer of my history might wish it were. The extent to which they can act effectively without corroborating the data they sift – and corroborating mostly with the ‘generator’ of the info – is quite limited.

    And believe me, the telcos and anyone else will find out in the most painful way if they go imagining they can do otherwise.

    • John says:

      Depending on who you are and what is being communicated – there is a level of risk involved here as to how much others may see whether or not you wish them to. In the animated video, the archiving of an MMS is detailed. Well, an MMS could include the picture you took with your smartphone and sent to a doctor as an MMS for an opinion. Is the storing of that MMS by a telco something that one is comfortable with? I’m not really sure as we all have slightly different views of what is private and what is not. In this particular example, I personally do not want the telco nosing about in that type of MMS. Knowing my luck, I’d probably start getting anti-aging cream offers on my mobile facebook acct.

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