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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Ewizard88
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Ewizard88,
User Rank: Apprentice
2/15/2012 | 4:23:06 AM
re: Why Personal Health Records Have Flopped
Rarely do I comment - this article is not up to par - opinionated, lacking in substance..mostly a fill. IW - can do better.
Number 6
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Number 6,
User Rank: Moderator
1/30/2012 | 10:07:58 PM
re: Why Personal Health Records Have Flopped
Paul (and Rob),

Thanks for your responses. Glad to hear it was based on data and published as opinion. I'll read through that Annals of Internal Medicine article. Much appreciated!

As a first responder, I see many advantages to PHRs. But as an IT person, I worry about security and the possibility of misuse. Unfortunately, we have only to look at the current thefts of personal financial information to see what can happen.
ANON1241631011972
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ANON1241631011972,
User Rank: Strategist
1/30/2012 | 6:42:38 PM
re: Why Personal Health Records Have Flopped
This article blames patient apathy on the lack of adoption of the PHR. I donGÇÖt disagree that patients are apathetic about the PHR, given our empirical experience that, without a carrot or stick, adoption is lowGÇöparticularly visiting repeatedly often enough to remember a password. nüè

However, I donGÇÖt agree that the authorGÇÖs conclusion that people donGÇÖt care about their health is accurate. I think it is the usefulness of the PHR in managing oneGÇÖs health that is in question. To date, it has been very difficult to demonstrate valueGÇöparticularly when the PHR doesnGÇÖt integrate with the process of the care provider. To say that they care more about their car than their health is unfair. I think a PHR (at least up to now) is more like a scale model of a car than one that actually drives you anywhere. Which is why we have to pay people to go in and touch it up. And, why they will forget their password again as soon as they have earned the reward.
meltygarden
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meltygarden,
User Rank: Apprentice
1/29/2012 | 4:59:46 PM
re: Why Personal Health Records Have Flopped
I, for one, am anything but apathetic about my health and about monitoring my healthcare and treatment. However, I distrust how such an all-inclusive record of my entire health history might be misused to deny me insurance coverage due to potential future disease or condition potential. I have no reason to believe the insurance industry has anything but their bottom line at the heart of their interests, and I'm sure not going to make it easier for them to screw me even more than they already are. I keep my written records to share with doctors when I need treatment, should my primary care physician not be present, but committing that info to an electronic format that could be seen by who-knows-who (or whoever has the best-monied lobbyists) doesn't appeal to me at all. Bottom line is, part of protecting my health includes protecting my health information from people who are out to make a profit and couldn't care less if I live or die.
NJ Mike
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NJ Mike,
User Rank: Strategist
1/27/2012 | 7:04:56 PM
re: Why Personal Health Records Have Flopped
I agree. There may be safeguards in place now to protect our privacy, but what is stopping some busybody in the future from starting a program (for our own good, because they know better) that will look for certain things that will trigger responses. You're overweight, you get a letter from the government telling you how to lose weight. Heaven forbid you smoke, the health police will know it. It's the camel's nose under the tent.
NJ Mike
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NJ Mike,
User Rank: Strategist
1/27/2012 | 7:01:07 PM
re: Why Personal Health Records Have Flopped
Everytime I hear about a data breach, makes me leary about having my personal health records maintained in some huge depository. The medical records at my family does not present a big target for hackers, but I bet Google Health would have.
NJ Mike
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NJ Mike,
User Rank: Strategist
1/27/2012 | 6:58:30 PM
re: Why Personal Health Records Have Flopped
On one of those points - is the public's lack of interest in maintaining PHR's the reason for th ecollapse of Google Health? There could be a number of reasons for the collapse of Google Health, from poor promotion (do we have any idea how many people really knew about it?) to a wait and see attitude to its success (what happens to my records if it failed and was canceled) or its reliability or people just didn't trust Google to maintain their records.
LifeGrapher
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LifeGrapher,
User Rank: Apprentice
1/27/2012 | 1:07:04 PM
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!
mitchp
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mitchp,
User Rank: Apprentice
1/18/2012 | 8:56:51 PM
re: Why Personal Health Records Have Flopped
As long as this is just opinion...

Today's PHRs are of very limited value to anyone and suffer from a few major issues:
- Lack of trust (especially PHRs from insurance companies)
- Lack of useful information (access to EHRs)
- Lack of usability
- Lack of real-world usefulness, i.e., they don't really connect patients with providers they're just patient tools

Numerous surveys have shown that people want electronic access to their health records (EHRs). Depending on the survey and the way the question is asked, I've seen anywhere from 63-93% saying they wanted it.

Unfortunately, PHRs are very much lacking in this key "draw".

If a PHR can provide access to EHRs in a meaningful way (with english explanations, etc.), it will draw users.

Then, if the PHR provides useful and usable ways to enter information and interact with healthcare providers (via collaborative apps that are more than the toys that are available today), use of the PHRs will be far greater than we see today.

PHRs with apps that link providers with patients for specific diseases/conditions will also increase patient compliance and help drive behavioral changes.
mljim
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mljim,
User Rank: Apprentice
1/18/2012 | 8:44:32 PM
re: Why Personal Health Records Have Flopped
I am going to have to disagree about people not using PHRs because they do not care about their health. It is because no one else does. The PHR is great for someone sick or someone taking care of a sick or elderly person and needs a full medical record to keep track of things. The problem is no one else cares - it will not change anyone's medical care. The ones that do care are those that would like to mine this information, even anonymously, for their own benefit. No one is going routinely look at this and proactively take action - except the patient or the caregiver/guardian. For the majority of people who are fairly healthy and keep track of their own meds and tests in their minds, there is no benefit to them to post everything online.
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