Why Personal Health Records Have Flopped - InformationWeek

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Healthcare // Patient Tools
Commentary
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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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...
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.
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.
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.
dschwartz895
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dschwartz895,
User Rank: Apprentice
1/13/2012 | 6:37:45 PM
re: Why Personal Health Records Have Flopped
There are three main reasons I think people don't want to use centralized data repositories for their PHR: Trust, Trust, and Trust.

There are all of these supposed "security measures" in place to keep data secure.

All of them rely on insecure means of communicating passwords and keys -- the telephone, FAX, and in-person communications, all of which can be overhead or intercepted by anybody. It's a joke!

Every time I contact a healthcare provider, I'm asked to repeat my several pieces of "verifying" information, and most of the time anybody within earshot can hear what I'm saying. This has got to be the worst possible solution!

As far as centralized PHRs go, the reason to avoid them is simple: virtually every insurance plan on the planet contains a clause that says that, in exchange for paying some of your medical costs, the insurer can do whatever they want with your medical information, including sharing it with whomever they like.

Obamacare may have eliminated the ability of insurers to deny coverage for pre-existing conditions, but I have no allusions that insurers are still collecting and analyzing our medical data and using it to build profiles. We have no access to the personal profiles they create about us; we have no say in how, when, or why they're used; and at some point in the future, if the laws change to allow insurers to again deny coverage based on pre-existing conditions, you can bet they'll be far better armed to deny more than ever.

To make matters worse, Republicans seem bound and determined to either repeal Obamacare in its entirety, or else give insurers and Big Pharma even more access to PHR data and keep their uses off-limits to consumers.

We've got several generations of consumers who have been basically trained that "pre-existing conditions won't be covered". The best way to deal with this is to not know.

The fact is, if you know about something "early", the insurance companies can make a case that such knowledge constitutes a "pre-existing condition" and they can deny coverage for it. Well, they could; now they can't. But old habits die hard.

If the medical industry wants to shift consumer attitudes towards prevention, then they need to make it more transparent how our "preventive" PHR records are being used IN TOTALITY, including a guarantee that data collected for PREVENTIVE PURPOSES will NOT, EVER, be used in the future to deny a claim.

I mean ... why should I get regular colonoscopies if they may lead to denial of coverage for something at some point in the future that could bankrupt me?

If neither I nor my doctors have a reason to believe there's a problem, there's a far greater likelihood that something will be covered down the line.

And with the way insurance companies use our PHR data, who's to say they won't build profiles that are more accurate at developing predictive models that will be used in the future to deny coverage if the laws change? There's no "opt-out" option in this database! And our elected officials clearly cannot be trusted to implement laws and policies that are in the best long-term interests in consumers.

Until these things change, I'm afraid that "ignorance is bliss" is perhaps the safest route to take.
RobPreston
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RobPreston,
User Rank: Author
1/13/2012 | 7:32:09 PM
re: Why Personal Health Records Have Flopped
It's an opinion column, part of the Commentary section, with Paul's photo. It's not presented as news.
Lisa Henderson
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Lisa Henderson,
User Rank: Apprentice
1/13/2012 | 11:33:08 PM
re: Why Personal Health Records Have Flopped
I agree with Paul, it's going to take a long time for people to change both their health behaviors as well as their trust of online security with their information. I like MedicalQuack's ideas as he is offering some real solutions, on the front end business issues and then, back to the article, Dossia's "downstream" issues with real people. It's holistic, it's a lot of cogs working the wheel, but we have to start somewhere. We are only at the beginning of this dialogue.

Lisa Henderson, InformationWeek Healthcare, contributing editor
teddertn
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teddertn,
User Rank: Apprentice
1/16/2012 | 5:15:19 AM
re: Why Personal Health Records Have Flopped
I would love to spend a couple of hours giving an in depth summary of my own experience after 7 years of being the IT dept for a primary care clinic with 7 providers and a director (the doctor who started the clinic) who has enthusiastically embraced EMR (electronic medical record) software and all the bells a whistles of the digital age, but time is short.
I think most of what you said was fairly accurate, but there is a lot more background that should be filled in. I felt really insulted by the comments of Dossia's CEO linked to in your article. I wonder if he has ever had the conversations with the doctors he sees for his personal care about their experiences with EMRs and especially about providing electronic access to patient medical information. We have been required to change EMRs twice in the last 2 years, but the 5 year run we had with our first one culminated in being able to provide a secure "Practice Portal" that gave truly extensive access to just about everything that ever happened to the patient for the whole 5 years at the clinic. It also allowed secure communications between the patient and the clinic. It was the poster child for what is expected in the digital age. But.....
After a year and a half of really aggressively recruiting our patients to sign up for the portal, we got only 10% signed up. My gut feeling is that the process of using the portal is just too complex and inconvenient. I base this on the effect it had on our website's volume of emails generated by online forms for specific questions about Rx's, billing, appointments, specific medical questions, etc. We went from about 100 emails a day (seeing about 120 patients a day) to about 90. The website was so much easier to use, that in spite of prominent warnings that the normal email communication has several privacy issues, the average patient preferred it because it was so much easier than trying to get through on the phone or logging into the Portal to send the message, and wait for an email to let you know you had a reply that you then had to go back to the Portal to read. So I wouldn't be so quick to assume that privacy trumps ease of use.
Now however, I've had to eliminate all those forms from the website in just the last week due to HIPAA concerns, and I expect the blowback from the patients to be awesome, especially since we do not have a Portal with our current EMR.
My point is that patients want easy access to their doctors and their medical records. They are not concerned with the extraordinary difficulties and expense that adoption and use of an EMR requires. The (sometimes) stunning expense of adding a Portal to your EMR is not even on their radar. They already have easy access to their medical information- they just call their doctor on the phone. If they need another doctor to have their records, they just call. Unfortunately, their patience and understanding of the expense of providing qualified employees to take those calls is non-existent. I've seen our call-center people reduced to tears trying to handle difficult or rude calls. The cost of providing this level of service is also prohibitive at the primary care level, where it is all we can do to keep our heads above water financially.
I think it is unrealistic to expect patients to maintain their own Personal Health Record, and no one is offering to pay the providers of health care to do it. The "incentives" are just not there sufficiently to make it happen. It will be hard enough just to get EMRs in widespread use as they are meant to be used, not in the often trivial way they are all too often now being used.
We have so far to go yet on just the basics- the observers, commentators and regulators need to get realistic about their expectations and demands.
ThePrisoner6
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ThePrisoner6,
User Rank: Apprentice
1/16/2012 | 3:58:13 PM
re: Why Personal Health Records Have Flopped
This is a complex issue, and there are a lot of factors, however teddertn touches on one factor that I think is crucial to gaining acceptance on a larger scale, and that is convenience. Adding an additional burden to the covered individual to collect, retain, and access their data is simply not an option. There is no carrot big enough to make them go to yet another web site and log in to view their records, unless it is as convenient as pressing an icon on their smartphone.

It's not that people don't care - this is an overly simplistic answer to a complex problem. Many people would gladly do it if it helped to eliminate all of the papers and medical bills they keep on file, especially if these documents could be searched and cross-referenced, but they are not interested in navigating multiple firewalls to get access. It is simpler and easier to make a telephone call. They simply don't need the additional burden. It needs to be as easy as swiping their frequent-shopper card at the CVS check-out. If PHRs can do that, then they will be well on their way.

In addition, there must also be some discussion and acknowledgement regarding who this conversion really benefits most - the health administrators, not the individual.

Most people don't need daily, continuous access to their medical records. The only time they need to look at them is to ensure this-or-that co-pay or prescription has been properly substantiated for reimbursement purposes, and these are really artifacts of a system that requires you to pay out-of-pocket, then be reimbursed by the insurer. It is an administrative layer that adds time and cost at every step in the process. Most human beings would rather not have to do this at all.

If we are re-inventing medical records, then some thought should also be given to finding efficiencies in other areas of the system, so they are integrated into an over-arching plan. Re-vamped records alone do not solve the problem. Make peoples' lives easier, and they will come running.
AdvocatePrivacy
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AdvocatePrivacy,
User Rank: Apprentice
1/17/2012 | 3:02:42 AM
re: Why Personal Health Records Have Flopped
Everyday there is a new headline about patient data loss. Sure there is a number of people who have a low interest in their health and therefore are not motivated to look in to PHRs, but many consumers will cross a point where it matters. This will take time and the benefit may be of great consequence to those that wish to take advantage of it. But if consumers cannot get past the frightening headlines of ID theft and out of control data losses then the benefit will never be realized past the point of consideration. Privacy of sacred medical information has to become a top priority or educated consumers will not willingly take the risk. Privacy lost once is privacy lost forever. If information about your diagnosis , medications or medical history becomes public it is never again private. Never. Peace of mind is lost forever and most consumers realize there isn't a do-over. Laws today in most states criminalize breaking into a filing cabinet to steal medical records, but very few criminalize actions related to obtaining those records electronically until you can prove they profited from that information.

A combination of updating government policy to hold criminal accountable for criminal actions and holding companies responsible for data breaches when negligent will build faith in a system that could empower patients and assist health care professionals in raising the quality of care.

The information shared with your doctor remains the most sacred of all information. Consumers will respond when they feel they control their own information, and it cannot be had by any and everyone.

www.advocateprivacy.com
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