Why Personal Health Records Have Flopped - InformationWeek

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Healthcare // Patient Tools
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1/12/2012
01:44 PM
Paul Cerrato
Paul Cerrato
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Why Personal Health Records Have Flopped

It's not a security, privacy, or data-sharing problem. It's a patient problem.

What's holding people back from signing up for a personal health record? According to Colin Evans, former CEO of the PHR provider Dossia, it's the unwillingness of healthcare providers to give them control over their medical data.

I couldn't disagree more.

The main reason the public doesn't sign up for PHRs en mass is they don't really care that much about their health. Yes, concerns about security and privacy and the reluctance of providers to share patient information slow things down, but at its core this is about apathy.

Just look at the statistics. Despite the push by medical and technology industry stakeholders over the years, only about 10% of Americans now use an electronic PHR. And let's not forget the recent demise of Google Health, the search giant's attempt to get the public interested in PHRs.

[Which healthcare organizations came out ahead in the IW500 competition? See 10 Healthcare IT Innovators: InformationWeek 500.]

As I've said before, most Americans care more about their cars than their health. They know more about automotive specs than they do about physiological specs. Similarly, most people want to see a doctor only when something breaks down, and then they expect a pill or procedure to make things right, just as they expect their car mechanic to fix their cars. Healthcare for most Americans is about having someone else "make it better," not about personal responsibility.

Preventive medicine has always been a hard sell in the U.S. It's hard to convince most healthy people--especially men--to get a colonoscopy or any other screening test when they aren't experiencing any pain.

So how do health IT professionals fix Americans' PHR apathy? They can't, any more than physicians can fix America's obesity epidemic. These are societal problems that require massive cultural shifts.

That's not to suggest that we should abandon PHRs. Nor am I belittling the work of organizations like Dossia, a non-profit organization founded by AT&T, Intel, Walmart, and other large companies to encourage employees to get actively involved in their own healthcare. In the end, healthier employees lead to lower employer and employee healthcare costs.

According to Evans, some of Dossia's corporate clients have succeeded in enrolling as many as 80% of employees. A lot depends on how much the client company promotes the service and the kinds of incentives it provides employees.

The positive results obtained by groups such as Dossia should prompt employers, insurers, and PHR vendors to continue reaching out to the public with the right combination of carrots and sticks. But by the same token, we have to accept the fact that it's going to be a very slow process, at least for most healthy Americans who visit the doctor for the occasional broken bone or sinusitis. (Those with life-threatening diseases are a different story, since they have so much more at stake in keeping track of all their medications, lab tests, and surgeries.)

IT pros, like doctors, are fixers. And that's a good thing. But faster networks, more secure databases, and improved information sharing can't cure people's apathy about their own health. That social disease is going to need much stronger medicine.

When are emerging technologies ready for clinical use? In the new issue of InformationWeek Healthcare, find out how three promising innovations--personalized medicine, clinical analytics, and natural language processing--show the trade-offs. Download the issue now. (Free registration required.)

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JimInKS
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JimInKS,
User Rank: Apprentice
1/13/2012 | 6:24:05 PM
re: Why Personal Health Records Have Flopped
I think lack of standards and wide acceptance also plays a part. You don't have much confidence that whatever provider you see will be able to access or use your phr.
Number 6
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Number 6,
User Rank: Moderator
1/13/2012 | 6:09:33 PM
re: Why Personal Health Records Have Flopped
Paul, what are you basing your comments on? Peer-reviewed studies? Surveys and polls? Discussions with other people?

Or only your own opinion?

You're certainly entitled to your view, but his should have been clearly published by IW as an opinion piece.
Tronman
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Tronman,
User Rank: Apprentice
1/13/2012 | 6:01:01 PM
re: Why Personal Health Records Have Flopped
Thanks, but no thanks. I can take care of myself and I don't need some busybody "health" organization sticking their nose in my personal business. That's the real reason others are also unwilling to go along with this socialist, big brother crap.
MedicalQuack
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MedicalQuack,
User Rank: Moderator
1/13/2012 | 3:57:46 PM
re: Why Personal Health Records Have Flopped
I have watched this since PHRs have come out and have been a big advocate and have many posts on my blog but the average consumer is not sold yet and I do have to say for good reason as you mention it comes down to trust for a lot of it. We don't know who aggregates and sells what data today and know that insurers are on steroids when it comes to behavioral algorithms to predict and also drive compliance. It's like we fear losing some of our freedom and in a way that is correct unless you use HealthVault as an example which is not tethered and not owned by an insurer.

I have said for quite a while that we need to license and tax the data sellers for a couple of reasons, and this does not include browsers who use information internally to make searches better, but rather those like drug stores, insurers and so forth that make billions from getting "free taxpayer data" and then sell it. Walgreens said their data selling business is worth just under $800 million. What do they sell, well without a federal website and laws asking for disclosure, we don't know and again the consumer knows this too and nobody likes the unknown, so until something is done in this area, it's won't change much.

This practice also keeps the lines of inequality growing as it is tech war fare and corporations get richer with selling data they get for free and in the meantime states are having to put governor software systems in place as their servers slow down to a crawl to keep the bots out so consumers can have access, doesn't make sense does it? The very information sources that were set up for consumers is becoming difficult to access as corporate bots beat us to the punch.

I call it the alternative millionaire's tax to license and tax corporations that mine and sell data and make billions. Until some level of equality is derived here, the public is not going to trust in big numbers and for good reason. With huge profits for corporate USA in selling data they mine for free with not having to give anything back but rather keep taking we have a situation that I call "The Attack of the Killer Algorithms" for consumers and we just can't win, and thus so PHRs with the low levels of trust just kind of sit there.

http://ducknetweb.blogspot.com...
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