[eHealth] Re: your participation?

[Consolvo, Sunny]

I haven't thought through all of these issues, but some that often occur to me (and I believe would benefit from discussion by the panel) are:

1 - What are the long-term ramifications of helping people keep electronic records of their health-related information? This can have serious up and down sides, especially since it is so easy for electronic records to be copied and shared. It raises issues such as, how does the individual keep track of who has what information about him/her? Who has control over that information (and in what circumstances)? How can that information be used to help or hurt the individual? (e.g., health insurance is a topic about which I am often asked regarding the physical activity records that UbiFit Garden helps people keep). 

2 - A related thought has to do with our responsibilities as HCI researchers exploring issues with potential long-term impact. We are often dealing with early stage research prototypes that may be bulky and buggy. Even if we want to conduct studies that last several months at a time, the prototypes are often not up to the task (or are not in a form factor that participants would find acceptable to use for extended periods of time). What types of questions should we seek to answer that the community will find useful and that are also amenable to the early stage of the technology?

3 - Another related thought has to do with the accuracy of the records that our technologies create (or help to create). It has been my experience with numerous commercially available devices to detect physical activity that none is 100% accurate (nor do they detect the range of activities that can contribute to an individual leading a physically active lifestyle; e.g., pedometers do not detect bicycle riding). Most commercial systems do not allow the user to modify these records. To deal in part with this issue, we allowed the user to add to, edit, and delete inferred data in our UbiFit Garden system. While that approach seemed successful, it is also prone to error (e.g., intentional and unintentional misreporting). What are the downsides of these records being inaccurate? What can we do to mitigate those potential problems? (I'm certain these issues apply more broadly to health technologies and are not limited to physical activity).

Please share your thoughts...

-Sunny

-----Original Message-----
From: ehealth-bounces at ecs.soton.ac.uk [mailto:ehealth-bounces at ecs.soton.ac.uk] On Behalf Of m.c. schraefel
Sent: Saturday, February 21, 2009 7:46 AM
To: ehealth at ecs.soton.ac.uk
Subject: [eHealth] your participation?

Hello panelists,
how can i help inspire you to join a discussion in preparation for this panel?

We're trying to avoid the traditional "please prepare a five minute 
blurb and open the floor for discussion"

and get a general discussion and set of topics moving.

So here's your platform and opportunity to rant a bit with a group 
who've said they're interested in this topic - nay are quite 
passionate about issues around access to information from class and 
regional perspectives and other user positionalities.

Please feel free to leap in!

mc

>Some of you folks have kindly taken the time to fill in your areas 
>on the wiki for the up coming chi ehealth panel.
>
>thank you,
>
>Peter suggested that a mailing list may be an easier way to move 
>discussion along.
>
>Ok then:
>
>given your experience with health information - online or off - 
>looking at how people try to get information or how we try to keep 
>track or share that information -
>
>1) what is one thing about which you might say you were passionate - 
>that absolutely has to be discussed at a panel concerned with 
>proactive/preventative health support and human usable, human useful 
>design?
>
>
>2) what have you found that is one take away from any work you have 
>done in making health related info systems useful/usable that you 
>would like others to know/keep in mind/use?
>
>With thanks for your time,
>
>looking forward to the discussion here,
>
>mc
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