Why Personal Health Records Have Flopped - InformationWeek

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Why Personal Health Records Have Flopped
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CKILLAM000
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CKILLAM000,
User Rank: Apprentice
1/18/2012 | 7:49:45 PM
re: Why Personal Health Records Have Flopped
I don't believe there is a single reason why PHRs have not been more successful, but I will add one more based upon personal research that I have conducted using surveys for my thesis - age. Younger generations appear to be more accepting of the social benefit of EHRs / PHRs than older generations. In addition, younger generations are more accustomed to turning to their PCs, Macs and iPads to manage and store their data than older generations. Based upon the survey feedback, many of the respondents feel that this is simply a matter of time.

I also think that lack of awareness is another factor, but this is just a personal thought not backed by research.
ANON1250182231641
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ANON1250182231641,
User Rank: Apprentice
1/18/2012 | 3:53:40 AM
re: Why Personal Health Records Have Flopped
As far as I know, standalone PHR has been a failure because nobody wanted to pay for it. Health plans and hospitals would all like to keep the patient data in their wall garden. For the few that ventured to offer a patient portal, you read the experience from commentators that it was too hard for patients to learn.

I think as an add-on to an EHR, patient portal is a viable convenience for patients and cost-saving tool for the providers. However, you can't make a profit selling standalone PHR. Plus, people don't want to enter their data manually. A standalone PHR without integration simply isn't attractive enough.

A few of the earlier PHR vendors have pivoted away from PHR into employee fitness space. The hope there is that employers would pay for employees to get accounts and incentivize them to participate. Keas is one of them. There is a little bubble forming in that sector, in fact, given the recent VC investments.

pcerrato10
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pcerrato10,
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1/17/2012 | 8:38:55 PM
re: Why Personal Health Records Have Flopped
Teddertn, thanks for your valuable comments. It's pretty clear from your hands on experience that "the process of using the portal is just too complex and inconvenient," as you say. Patients don't really care about all the hurdles IT pros have to jump in order to meet government regs. They wants things to be quick and easier.

Paul Cerrato
Editor
InformationWeek Healthcare
pcerrato10
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pcerrato10,
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1/17/2012 | 8:21:00 PM
re: Why Personal Health Records Have Flopped
Number 6, I'm basing my comments on a few things. The peer-reviewed medical literature cited in my column points out that only 10% of patients have signed on to PHRs. A rather low figure. (See the hyperlink for the original paper in the scholarly literature.)

The other piece of evidence that shows the public's lack of interest is the collapse of Google Health.

And finally, having spent several years working as a clinical nutritionist and nutrition lecturer has convinced me that most Americans don't want to work too hard to stay healthy. Filling in PHRs is too much work for many.

Paul Cerrato
Editor
InformationWeek Healthcare
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
ThePrisoner6
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ThePrisoner6,
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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.
teddertn
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teddertn,
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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.
Lisa Henderson
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Lisa Henderson,
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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
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.
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.
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