re: Why Personal Health Records Have Flopped
Everyone's arguments hold some water albeit more than others. My 2 cents is for boosting lifelong adoption (embryonic to post-mortem) is based on a radical change in the human computer interface for PHRs and the expanding the feature set.
First, their needs to be a breakthrough in personalizing digital human models from the skin inward so when a PHR user lands on his/her web page (tethered or not) they see at least the last quantified 3D renderings. Given the types and fidelity of the display a user has will determine what this looks, feels, sounds, smells and tastes like. User will not see any healthcare entity's logo or landing page for a portal. Personalization starts with elmination, in this case the PHR vendor presence and everyone else who might have financed or could profit from the sell, distribution and use of the software. It doesn't mean PHR users cannot access these entities during their navigation. Just not on start up or the landing page. Of course, simulating, animating and visualizing one's quantified [naked] self are part of this innovation. It takes too many words to discuss further here but image taking a picture or video of yourself with your smartphone, pushing a button to allow that "data" to be ingested by your digital human model for an untold number of analyses by you and/or others locally or via networks and the web if you so dare (or don't care).
Second, the feature set expansion needs the best of role playing games (gamification) and health planning and management as in the personal/professional financial planning. Even though I do not use a PHR, I am under the impression these tools are not designed for users to set parametric goals and the software calculate variances like one sees in project management software. If you are familiar with Earned Value Management, you clearly know what I am talking about. A PHR needs features that make it the killer app of the century. Probably not going to happen depending on how one measures usage to attain killer app status. I'm saying my PHR is more than a record of the past but the Life of Record (as Program of Record in Major Defense Acquisition Programs) where I set goals at the same resolution or lower as I can quantify myself. My PHR has engines embedded or via web services that forecast, estimate, etc. using my data set. The force model, like the ones using in orbital mechanics to propagate trajectories forward or backward in time based on observations, is a synthesis of biological, physiological and societal laws to assumptions that validate my goals wrt my work plan to achieve them. It might sound complicated and time consuming for the user (30+ minutes a week) and could be but it doesn't have to be because the user determines the level of accuracy and precision they want to live their life. Never recording anything, living well to 100-yo and knowing you didn't waste time with gadets and software to motivate you to sleep, eat, love, worship, exercise, learn, ... well and often is a valid goal too!