Fwd: [ptmanagerblog.com] Rest in Peace: Personal Health Records (PHRs) | The Health Care Blog

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Now on PTManagerBlog <http://www.PTManager.com> Rest in Peace: Personal

Health Records (PHRs) | The Health Care

Blog<http://ptmanagerblog.com/rest-in-peace-personal-health-records-phrs-th>

Posted by <http://posterous.com/people/1l1oCkDWEWjv> Kovacek, PT, DPT,

MSA <http://posterous.com/people/1l1oCkDWEWjv> to

PTManager<http://ptmanagerblog.com>

By JOHN M. GROHOL

<http://thehealthcareblog.com/files/2011/04/Screen-shot-2011-04-14-at-7.40.23-AM\

..png>While

doing some research the other day on personal health records (PHRs), I came

across this

article<http://www.ihealthbeat.org/articles/2010/1/28/revolution-health-to-termi\

nate-phrs-everyday-health-files-ipo.aspx>,

describing Revolution Health’s announcement — without much media attention —

about dropping its PHR at the beginning of 2010. (*Disclosure: I worked for

Revolution Health in 2005-2006, and now have a business relationship with

the company that acquired them, Everyday Health.*)

The most interesting statement I found in this brief news article was, “The

e-mail did not indicate why the company decided to terminate its PHR

service. The company advised users to download their PHR as a .pdf file and

save the document for their records.”

Ah, a PDF. Yes, that’ll make it extremely easy to get that data into some

other PHR *(sarcasm alert)*.

And that led me to understand the underlying problem with *all* PHRs today,

and the problem PHRs have always had — nobody trusts the companies who offer

them, and few people understand what they are or why they should care.

And that led me to understand the underlying problem with *all* PHRs today,

and the problem PHRs have always had — nobody trusts the companies who offer

them, and few people understand what they are or why they should care.

I kind of chuckle when I hear a company describe that a part of its business

strategy is the personal health record. I first heard of a PHR back in 1999,

when I worked for drkoop.com, at that time competing for the #1 spot as the

leading consumer health website with WebMD (drkoop.com lost). Drkoop.com’s

management had this brilliant idea that everybody would want — and pay for —

a personal health record online. In fact, this was the founding principle of

the company that eventually became drkoop.com (as seen in one of their SEC

10k

filings<http://www.sec.gov/Archives/edgar/data/1073794/0000930661-00-000842.txt>\

from

that time):

To say that the idea of a personal health record (or personal medical

record, as they called it) has been kicking around the Internet for a long

time would be an understatement. (Drkoop.com dropped the idea altogether

after a falling out with their PHR development partner, HealthMagic.)

Our company was founded in July 1997 as Personal Medical Records, Inc.

During 1997 our primary operating activities related to the development of

software for Dr. Koop’s Personal Medical Record System.

But nobody pays much attention to history on the Internet. One of the most

frustrating components of consulting for companies today is their inability

and unwillingness to listen and to learn from the companies who’ve come

before.

Had the folks who were running Revolution Health at the time really dug into

the market for personal health records, they would’ve seen exactly what

we’ve seen now for well over a decade — nobody’s clamoring for them. Nobody

is going to their doctor and saying,

“Gee doc, if only I had some way where I could manually enter in all of this

data and try and keep it updated on a regular basis, and ensure that the

company I choose to enter all this data in with is (a) going to be around 5

years from now and ( is going to allow me to export it in a way that is

actually helpful, I would be so much happier and healthier!”

Of course, let’s assume that I’m wrong. Let’s assume the 2011 IDC Health

Insights’ survey of 1,200 consumers done earlier this year showing only 7

percent of respondents ever having used a

PHR<http://www.informationweek.com/news/healthcare/EMR/229401249>,

and less than half still using one — which is virtually unchanged from when

they conducted the same survey *5 years ago*. Let’s say consumers are

chomping at the bit for this kind of personal tracking ability.

What will they find?

Poor quality systems that haven’t undergone real-world testing with

real-world data. As we discussed back in April 2009, PHRs simply don’t work

as intended with real-world

data<http://e-patients.net/archives/2009/04/e-patient-discovers-significant-flaw\

s-in-system-spin-doctors-get-to-work.html>.

If one of the largest companies in the technology world with some of the

brightest engineering talent on Earth can’t get this right — Google Health,

in this case — what hope do we have?

Well, it seems, not a whole lot.

A March 30 article over at eWeek describes how Google is unlikely to move

forward with Google

Health<http://www.eweek.com/c/a/Health-Care-IT/Googles-Larry-Page-May-Pull-Back-\

on-Health-Portal-WSJ-515835/>.

Instead, it’s likely to be relegated to the backburner, along with all of

its other failed experiments. Of course, Google won’t comment on this, and

they never will. Every company trumpets to every media outlet possible when

they release a product, but mum’s the word when it comes time to acknowledge

the product was unsuccessful and they’re shutting it down (or worse, putting

it into a static state with little future development).

This is exactly the lack of transparency and openness consumers are fed up

with, and one of the primary reasons patients are leery of trusting their

personal health data with a single company. You don’t know whether it’s

going to go under, sell your health data (even in aggregate form), or simply

decide to quietly stop supporting its service in any meaningful way (without

actually shutting it down). You may get your data out, but it may only be as

a PDF. Today, there are still no widely-implemented standards for sharing

health data records (although that is changing, slowly).

There are some notable exceptions, which I should call out here so that we

can end on a positive note.

PatientsLikeMe.com<http://www.patientslikeme.com/>— which just opened

up to everyone for any health condition — is quite

transparent about what they do with your data. They aggregate it, they sell

it, that’s how they make their money. And apparently it’s working, since

they’ve been around now for many years.

Electronic medical records, like Microsoft’s HealthVault, are also a

different animal, because they have tended to focus on addressing more of

the needs of the provider, health care systems and hospitals, rather than

just consumers. Paying attention to both sides of the equation — how data

enters the system and how data gets out — is so important, yet something a

lot of products in this space underestimate or pay nothing but lip service

to.

I think it’s time to finally put the idea of a global personal health record

to bed, permanently. We already have lots of individual personal health

records floating around out there, tied directly to our personal health

interests. And while it would be *nice and more convenient* to have them all

somehow communicate with one another, companies who own all these individual

records seem reluctant to explore the possibilities of enabling such

communication. There are a lot of reasons — some valid, some not — for this

reluctance.

Perhaps this will change in a more open and transparent future. But I won’t

be holding my breath.

Also check out Amrich RN’s article on the Google Health rumor mill, Have

rumors of Google Health’s death been greatly

exaggerated?<http://www.zdnet.com/blog/health/have-rumors-of-google-health-8217s\

-death-been-greatly-exaggerated/136>

* M. Grohol, Psy.D, is one of the pioneers in online mental health

education and support, getting his start on the Internet in 1992 with

depression support groups and advocacy efforts. He founded and is the

publisher of the Internet’s leading mental health and psychology network, Psych

Central <http://psychcentral.com/>.*

via

thehealthcareblog.com<http://thehealthcareblog.com/blog/2011/04/14/rest-in-peace\

-personal-health-records-phrs/>

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