On the Internet You Can’t “Take it Back”

 
MSDN Blogger, Tatiana Racheva, thinks you can have a "do over" on the Internet — but once you post something on the Internet . . . it’s public. If you wish to recant what you said online, you simply need to write a new article.
 
I promise I’m not picking on Tatiana personally, it’s just that when I read their article I was impressed that a Microsoft employee would openly criticize HealthVault.  However, by the end of the day they had a "change of heart" and now their article states:
MSDN Tatiana Racheva: "On a second thought, I’d rather talk about this on my personal blog :)"
 

 
HERE’S THE ORIGINAL ARTICLE — YOU CAN’T DELETE THE INTERNET . . , WATCH WHAT YOU POST!

 

I’d rather Facebook manage my Personal Health Record

 

I tried HealthVault today, as well as Google Health. The following qualified opinion is from a user’s perspective and probably contains factual errors because I didn’t understand the products’ designers’ intent. Also, this is just my first impression.

In the end, I deleted my Google Health account, and deleted everything from HealthVault (which I believe it let me do by mistake). To paraphrase Michael Pollen’s view of nutrition science, this field of Personal Health Record management is very, very young, and I prefer to wait for it to mature.

 

To begin with HealthVault – it seemed like a mere skeleton, and not even an attractive one. I felt that it lacked content and had a really awkward, sometimes inexplicable user interface. For instance, how is it that I can delete my Personal Demographic Information record and not be able to add it back? Or, why couldn’t I figure out how to specify my blood type? The feedback form is simply abysmal – it makes you rate every aspect of the service every time you want to leave a feedback comment, and the comment field is limited to 1000 characters (of course, it lets you type more and doesn’t tell you how many you’re over, so you have to try again and again before you successfully submit).

I have to admit that Google Health was much nicer, with lots of fun things to do that appeal to me, some of which were:

 

    • Adding medical contacts from the list of providers, and creating ones on the fly was super easy, and also useful.
    • Adding health events (like a concussion you’ve had 3 years ago) and modify them later – very easy and intuitive
    • "Exploring" 3rd-party services, like importing files from online pharmacies and linking with sites that are supposed to help me be healthier (as an aside, the arrogant aspect of all these initiatives that are supposed to help me "make healthier choices" is insulting)
    • I found out right away how to add my blood type information 🙂

Some UI snags – an annoying datepicker that doesn’t let you type in a date and insists on making you use the selector. But overall – very nice, I didn’t feel like I wanted to do something that I couldn’t figure out how, which was what my whole experience with HealthVault like. Importing files into Google Health was also much less vague and hinted at being almost meaningful. HealthVault let me upload my Visio diagram – what for? Google Health delegates to other services to import records from there – that makes lots more sense.

 

Still, both services don’t have a convincing access/permissions story. I ended up using HealthVault in the first place because I had to create the account for the Navigenics study. Navigenics collects a saliva sample for a genetic test, and makes you take a survey (powered by SurveyMonkey – why???). As a result, HealthVault requires me to give Navigenics an ongoing read/write access to most of my health record. This is so strange to me – why can’t HealthVault arrange the survey on their end and just hand the info over to Navigenics? I don’t want Navigenics to have ongoing access to my HealthVault account at all!

 

Google Health has a similar story there.

    1. It only let me share read access to my account with my boyfriend for 30 days. Although I like it that the only choice is a conservative one, the functionality is lacking.
    2. Next, I chose to link my account with TrialX.org – a website that can crunch through my health conditions and suggest medical trials in which I could participate. Once you link your account, TrialX also gets ongoing read (/write?) access to basically everything. Also, linked services don’t appear in your sharing page, as they do on HealthVault. I had to search online to find out how to unlink a service from my profile (go to Google Health Settings). For a second, I kind of freaked out.

The bottom line is, both Google Health and HealthVault are eager to share my information with third parties without giving me enough control over exactly how much and in what manner. This aspect is absolutely a Priority Zero [that is, higher than Priority One :)] for personal health record (PHR) software.

 

What I would like to see before I would consider to seriously use either of these services is (and given that I work for Microsoft, what I’m saying is that I would love to see this be implemented in HealthVault):

 

    1. A way for me to give my information to such services Anonymously, on a one-way, one-time basis. For instance, TrialX doesn’t need on-going access to my health record. Neither does it need to know my name and other personal information. I want to provide it with my conditions, and I want to see the list of matching trials. That’s it. If I want notifications, I still don’t want TrialX to connect my conditions to my personal info – hell no!
    2. The ability to approve updates from services that I grant write access to my health record. For instance, Navigenics has write access to my insurance plan info. What? Do I really want Navigenics to change that information without my approval? The answer, again, is NO.
    3. The ability to grant to and withhold access from specific entities to individual types of information and even individual items.
    4. Ensure that entities other than HealthVault cannot keep copies of this information – it I want to suddenly delete something, how can I be sure that it will be deleted from everywhere and not just HealthVault?

 

In essense, I’m expecting titanium-clad security, privacy, and access control that feature Real innovative solutions. I currently see more promise from social networking sites such as 2Chan/4Chan and Facebook in those regards, which is surprising.

 

Published Monday, June 15, 2009 5:37 PM by Tatiana Racheva
Advertisements

About blakehandler

BLAKE was a Microsoft MVP and award winning programmer with over 20+ years experience providing complete Windows and networking support for small to medium sized businesses. BLAKE is also Jazz Musician and Instructor for residential clients on the Los Angeles West Side.
This entry was posted in Opinion. Bookmark the permalink.

3 Responses to On the Internet You Can’t “Take it Back”

  1. Kathy says:

    Sharing personal health data with HealthVault and Google Health might be risky, but both companies, especially Microsoft, have gone to great lengths to make it secure, even at the cost of reducing ease-of-use, as you discovered when you couldn’t restore your deleted personal demographic profile. Your personal health data is certainly more secure with Microsoft than it is with your local hospital’s IT department. Did you have concerns about sharing data with Navigenics (genetic data)? That was the one that really scared me. After I read the fine print on the Navigenics privacy agreement, I decided not to risk sharing my data with them. Their privacy agreement was full of holes, and my lawyer husband agreed. We would love to know our genetic profiles, but not at the risk of that information also being available to future employers, insurance companies, or governments.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s