I have to disagree with your labeling, though. HealthVault, Google, and Dossia really aren’t PHR’s at all. Even these companies don’t really consider themselves to be PHR’s. PHR’s are a set of API’s, and consumer directed tools and interfaces, like you see with iHealth, ActiveHealth, HealthTrio, and the myrad of other smaller PHR vendors that are out there (By the way, that isn’t an endorsement of any of these particular PHR systems, just a list of examples). A simplified definition of a PHR’s primary intention is, “to make it easy for patients to interact productively with their healthcare information”.

Tools like Dossia, HealthVault and GoogleHealth are “repository systems”, or “Health Record Banks”. There’s a VERY limited segment of consumers out there that will interact with their healthcare data directly through HealthVault with any kind of frequency that would be beneficial. It’s just not a user friendly interface, and it lacks the value services that the majority of consumers need to engage with. It was designed to be that way. Microsoft isn’t interested in making HealthVault pretty to consumers. They’re interested in partnering with other people who can provide the PHR component. The main value of HRB’s or repositories is to provide connectivity (and secondarily storage capacity for smaller institutions that can’t cost effectively maintain their own servers, etc).

Patient Portals are a much broader group of services, provided by health organizations, in which patients have access to “below-the-log-in” data, whether this is licensed health education content, billing inormation, or other health related services. PHR’s are often part of the suite of services offered from within a patient portal, and some PHR vendors are even starting to create pre-fabricated patient portal services that healthcare institutions can buy as a sort of “plug-and-play” solution, they aren’t the same thing as a PHR.

Incidentally, do you know you’ve not approved my comment, which is still awaiting moderation? I understand you must got diverted by the RSS solution…

Jim and all others using RSS readers, happy to report that you should now be receiving the full post feed. Any problems, just let us know and thanks for your patience.

- Go to Settings (in the right hand upper corner)
- Select Reading (the second row of menu tabs across the page)
- In Reading Settings select full text, instead of summary where it says ‘For each article in a feed, show” under (it’s the fourth section of options there)
- Save changes and you are done.

Full feed is indeed de rigeur for us, information gluttons, and feed readers are the way to catch up with blog reading, hence the first commenters rather abrupt demand for a full text feed… On the bright side, someone wants to read your posts, so as usual, the user rules!

Hope this works, and if not, give me a shout (feel free to use the email provided for this comment).

Finally, a great article. I came across it following a winding link path from this post: http://blogs.technet.com/neupertonhealth/archive/2009/04/03/tear-down-the-walls-and-liberate-the-data.aspx

I work on an open source project called The Mine! project, which is meant to provide web users with ability to reclaim their data online, manage them according to their needs and share it on their own terms, without disrupting the connectivity and social aspects of online existence. http://www.themineproject.org

I am interested in personal health records but from the position of someone who is used to manage all my other data using online tools. I have been following MS Health Vault and Google Health Platform and especially Indivo (which I believe is only accessible to those who are part of the Dossia project).

Brian,
I disagree though understand the point you are making about tethered apps having more ‘useful data’ than an untethered. I just don’t necessarily accept it. I prefer to go the way of Sugarstats http://www.vrmlabs.net/2009/03/sugarstats/, which turn the individual/patient into the pivotal point, not the institutions he needs to interact with. This is already happening on the web with ‘media’, i.e. information, publishing, distribution etc. and there is no reason it shouldn’t happen in other areas of our lives. Will take time to happen, of course, but then, most good things do.

“Hence, if you’re a diabetic at an HMO, you’re going to find a lot more value in the diabetes “app” in your…

“tethered” instead of “un-tethered”

…PHR which incorporate messages from your care team, target ranges, upcoming appointment data, med regime updates, ect. than in a glucose tracking app you found on HealthVault.”

Looking at other industries shows there will always be a place for both tethered PHRs (like KP.org) and un-tethered PHRs (like HealthVault).

Tethered PHRs let healthcare organizations take advantage of market-differentiating and cost-saving e-services like messaging, electronic lab results, electronic questionnaires and HRAs, e-visits, appointment scheduling, ect. Un-tethered PHRs like HealthVault cannot replicate these e-services because the e-services are so tied up in each specific organization’s EMR configuration and workflows. Are you ever going to be able to initiate a financial transfer or send a secure note to you bank’s customer service via a “personal finance record” like Quicken, MS Money, or Mint.com? Unlikely. The parallel is bank customer portals are very much like healthcare organization patient portals (“tethered PHRs”) and Quicken and MS Money are very much like HealthVault (“un-tethered PHRs”). Even if it were technically possible, banks and healthcare organizations would not let go of their e-services because they want patients to come to their website to be exposed to new products and services and to build their brand.

Like you stated, Kathleen, the value of un-tethered PHRs is basically in promising to securely store the patient’s health data forever (which healthcare organizations hosting tethered PHRs have no interest in doing). Of secondary value are the 3rd party applications that can feed off the patient’s data (John, my thoughts on how valuable these apps will be as payors start financing more sophisticated devices are below). I think healthcare organizations will eventually be pushed to linking with un-tethered PHRs by consumer demand or legislation but that’s not where we are now.

So even when un-tethered PHRs are commonplace for average Americans (10 – 15 years?), I expect people to still use tethered PHR e-services to interact with their healthcare organization.

——————–

Value of tethered and un-tethered apps –

3rd party applications linked to un-tethered PHRs are of little value today, in my opinion, because there is limited data in un-tethered PHRs. As technology enabling simpler uploading of biometric data like Bluetooth gets cheaper, more health plans will put these devices on their formularies, more patients will use them, and the value of apps that organize pedometer and glucometer data, for example, will increase. However, patients will likely upload their health data to where they are told to upload it. HMOs will want the devices they finance to dump data directly into their EMRs without any PHR meddling (they will not want patients to be able to revoke the connection to the device by altering their PHR privacy settings). Meanwhile, big insurers like Aetna will probably want their patients to upload data to some centrally managed repository which may or may not feed into healthcare organization EMRs or un-tethered PHRs. The only market I see uploading directly to un-tethered PHRs are the health-conscious consumers with increasingly cheaper biometric devices. Hence, if you’re a diabetic at an HMO, you’re going to find a lot more value in the diabetes “app” in your un-tethered PHR which incorporate messages from your care team, target ranges, upcoming appointment data, med regime updates, ect. than in a glucose tracking app you found on HealthVault. So the most valuable “apps” may end up being those built into tethered PHRs instead of 3rd party ones feeding off of un-tethered PHR data.
[Regarding most organizations not wanting to work with un-tethered PHRs, yes, Cleveland Clinic is running a trial with HealthVault. However, I believe that's mostly because Cleveland wanted Microsoft's Connection Center, which is currently ahead in cheap device connectivity and only works with HealthVault. As I mentioned, it doesn't make sense to route device data through PRHs which pins the success of an organization's Disease Management program on patients not fiddling with the privacy controls. Think of all the false alarms of patients suddenly not uploading health data - alert fatigue is dangerous.]