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Personal Health Records – PHR Roundtable At the ONC-Hope All Experts and Attendees Actually Use a PHR-Hands On Experience

Posted Dec 02 2010 7:13pm

A little background here on the Medical Quack is that I have been following PHRs since they began with HealthVault and Google Health and actually have a section on image the blog with over 300 posts with many ‘how to’s” and a ton of information.  What is very distressing though is on the internet I run across all these “experts” with PHRs and when I ask them which one do they use, I get something like this…ummm….well…I’ve looked at a few…thinking about starting one…to the ending of something like I’m going to start one next week. <grin>. 


We end up with Magpie PHR Chat which is just about like reading a book on how to drive a car and then showing someone else how to drive via text book knowledge?  Stuff will be missed; however if you choose to be trained and educated by someone who currently drives a car, aha, much better knowledge to be gained, as again nothing like first hand knowledge with “consumer products” and PHRs ARE CONUMER PRODUCTS.  Even if participants are not heavily involved at least take the time to take one out for a trial run. 

I see this so much out there too with the “Magpies” that just repeat what they hear and have never stuck a toe in the water and thus they just repeat and we get the awkward paradigm that keeps surfacing of “it’s for those guys over there”.  If you read here often enough you have seen this mentioned before when I address the “non participants” we have in Congress that are lacking in some general consumer digital literacy.  You can’t help but notice that as it is in the OMG news all the time. 

I’m not really picking on anyone in particular here as I have busted Microsoft image[14] employees who don’t use their own HealthVault too on occasion and there’s probably just as many hanging around Google with the same issue, so those 2 in particular might think about their “internal sell” as again it is not “just for those guys over image there”. If it is so good, everyone should be using one and at least companies that provide them should promote the use internally, AGAIN THIS IS A CONSUMER PRODUCT AND FREE TOO FOR THOSE 2 MENTIONED.  image

One other item too that I see around the web is that so many write these long elaborate posts on why you should be using a PHR, and then they don’t use one, so what’s up that that?  I see many other bloggers do this and don’t even provide their readers a like to get started with one, but they are healthcare bloggers so I would think a few links for their readers would be helpful, right?  I do it and it doesn’t take up that much valuable real estate on a site.  If consumers see the links often enough around the web, it just might perk that area of curiosity and nothing gets started without that being perked.  Back in September of 2009, the link between curiosity and intelligence was published. 

Back in January of 2009 I sat and listened to the Senate Finance committee video, which they have now removed, hear testimonies from Kaiser Permanente and Microsoft and duh, none of them knew what a PHR was and mildly related to electronic medical records.  Hopefully we have grown since that day !   I was reading Dr. Halamka’s blog that day and he posted the link so I took the time to watch the 2 hour long video and a compliment here is deserved as well for his testimony as they all called him the “jet” and we need of fleet of people like him.  When you read what is posted on the web, his information has value for a couple reasons.  One this that he is such a smart guy, but rather more important is the fact that he takes time to share that knowledge and he’s “hands on”.  I have not seen anyone else out there with the credibility and it’s sad as again we need more like him out there who are not afraid and who actually put their hands on technology and touch the stuff and share it openly, again while most of the rest of what I see falls into the “magpie” category. 

Dr. Halamka is an MD but still take the time to establish his own PHR too and shares information from his experiences.  I do the same from my little corner of the world as best I can as that is what people want today, not the experts that adhere to the old paradigm of “it’s for those guys over there”.  On that note, I hope all that work in the ONC have a PHR too, it sure helps when it comes to professing what is good for the goose is also good for the gander <grin>.   I was kind of disappointed in not seeing Dr. Halamka on the list but I can completely understand as he has other stuff going on too with keeping the hospital IT system up and running as well. 

The other day I made a comment too on the amount of mobile applications we have out there too and pretty much said if they don’t connect to a PHR, if they are devices that collect data, then they are useless as being tied to a site that is web based and is used to collect data for marketing can be deceiving too.  Again, I hope all these scholars, and prominent researchers here take time to use a PHR and the same for companies that develop, it’s called “eat your own dog food” internally and when that occurs we all get smarter and benefit. 

Role models in this area suck as nobody wants to be one.  I have harped on that in healthcare for over 2 years and then we see these awful stories in the news how consumers lack IT literacy, again beating up on the consumer when we can’t get anyone off their duff to be a role model, and I guess they are either scared or are non participants themselves so in that case don’t open mouth as you might be asked some “social questions”, you know like we all do on the social networks, so in essence I guess you could say our leader suck at being social. 

We are going to expect that all use a PHR and yet we have those in Congress that have problems with using properties of Adobe pdfs so these folks are great candidates for becoming participants with digital consumer literacy and a PHR is a good place to start.  Consumers are getting hammered and told how dumb they are and it’s not fair when this level if illiteracy exists at the very top levels. 

The Properties of an Adobe pdf Document -Rachel Maddow Rips the GOP on Lack of General Consumer IT Knowledge And Exposes the Input and Authors of the Content–Lobbyists

Our governor though here in California has started an initiative though this is a good thing.

I’ll be sure though to check back even though I can’t attend and review and read up on what comes out of this, but again as I stated, more participants and a steering away from the paradigm of “it’s for those guys over there” is truly needed and role models too.  Here’s an older post that that topic, so please with image and everything being so important today, at least have some images on the web with minimal Joe Biden using a cell phone or for that matter Kathleen Sebelius, and again not picking but I looked all over the web and can’t see a picture of either using any technology. 

HHS National Plan to Improve Health Literacy – Not Going To Happen Until We Focus on Using Technology (The Tool for Literacy) Which Includes Role Models at HHS And Other Places in Government

This is important too as you have other software companies like Intuit wanting to integrate with PHRS and at one point I think they thought I didn’t like them, which was not the story at all, I was just being honest and conveying how few would know what they are talking about and later they did their own survey and found out, so again not picking but being a realist here, something I think is hard to find with all the “Shell Answer Men” that seem to walk the planet today. 


The Office of National Coordinator for Health Information Technology (ONC) will host a free day-long public Roundtable on "Personal Health Records — Understanding the Evolving Landscape." The Roundtable is designed to inform ONC’s Congressionally mandated report on privacy and security requirements for non-Covered Entities (non-CEs), with a focus on personal health records (PHRs) and related service providers (Section 13424 of the HITECH Act).

The Roundtable will include four panels of prominent researchers, legal scholars, and representatives of consumer, patient, and industry organizations. It will address the current state and evolving nature of PHRs and related technologies (including mobile technologies and social networking), consumer and industry expectations and attitudes toward privacy and security practices, and the pros and cons of different approaches to the requirements that should apply to non-CE PHRs and related technologies.

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