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Rest in Peace: Personal Health Records (PHRs)

While doing some research the other day on personal health records (PHRs), I came across this article, 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 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 (b) 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, 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. 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. 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 — 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 Denise Amrich RN’s article on the Google Health rumor mill, Have rumors of Google Health’s death been greatly exaggerated?

John 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.

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John WilliamsDavid RoweDodi HandyJonathan HalvorsonMargalit Gur-Arie Recent comment authors
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Merle Bushkin
Guest

Direct Exchange may be a step in the right direction but it falls far short of our needs today and in the coming years. It requires that docs adopt EMRs, which I suspect is why the established EMR vendors support it. But some 80%± of the 600,000 or so active physicians haven’t adopted them so they it can’t possibly meet the needs of most patients and doctors — either now or in the foreseeable future. Moreover, Direct Exchange makes only selected parts of a patient’s record available, not all of it. If I remember correctly, ONC announced that through March… Read more »

John Williams
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John Williams

There is now standardized interoperability between doctors offices and patients – its called Direct Exchange, and the leading EHR and PHR vendors are supporting it.

In the same manner that business data communications exploded with market adaption of standard data communications (the Internet), healthcare data communications is poised to explode with market adaption of standard health data communications ( Direct Exchange – directproject.org)

David Rowe
Guest

Thank you for sparking what has turned into a fascinating conversation. I hoped to add to it with a few more data points. It’s true that the most prominent PHRs have been marketed to consumers by entities outside of healthcare. Research published by the California Healthcare Foundation in 2010 placed this class of PHR at the low-end of the trust barometer. But the problem may be greater than trust alone. PHRs offered by trusted healthcare brands have been made broadly available as a component of health insurance and IDN offerings. Some have gained reasonable rates of adoption but, as you… Read more »

Dodi Handy
Guest

Merle – the answer is an absolute Yes! to your question: can we design a simple, convenient, easy to use, affordable and financially sustainable system that makes a patient’s complete medical record available at the point of care, and enables doctors to coordinate their patient’s care, improve the quality of care they deliver and reduce the cost of care? MedeFile (www.medefile.com) has addressed this! They have pioneered one of the most robust, intuitive and easy-to-use iPHR systems on the market. The key is that they collect, digitize and index all actual medical records for the patient and store it. The… Read more »

Merle Bushkin
Guest

Margalit, first, let me say I agree wholeheartedly with you, John Halvorson and anyone else who says people want convenience — and in “people” I include docs who originate and keep patient records. And I agree that the primary reason they don’t use or want what’s out there today is that what’s out there simply is not convenient. They are too hard to use and aren’t worth the effort (or cost). Having said that, the question is would they want, support, use and pay for systems that are convenient? I think the answer is a rounding YES! I have yet… Read more »

Leonard Kish
Guest

What Mint and PatientsLikeMe have in common is their heavy investment in user experience (UX). PLM founder Jamie Heywood mentioned at the health experience design conference (#hxdconf, http://www.healthcareexperiencedesign.com/) this week that they spent half of their seed money on a UX designer. Money well spent. MInt is used as an example of good UX that won out over Yodlee’s tough integration job in @EffectiveUI’s book by O’reilly. The user experience will ultimately drive the success of any Rs or Patient Portals. People will use these things with very clear value, and low risk (high trust) and minimal management. So far,… Read more »

Margalit Gur-Arie
Guest

Hi Merle, I don’t think we have a disagreement here. Patient Portals are not global PHRs (not yet), but they do have, or can have, the ability to make clinical data available to patients on the web. Many already display lab results, med lists, problem lists, immunizations, allergies, histories and some even have visit notes. And some allow you to download the information. Meaningful Use requires that they do. The only thing missing is the ability to display an aggregate of medical records from all providers. That will make the Portal a PHR. The big question, as Jonathan above also… Read more »

Jonathan Halvorson
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Jonathan Halvorson

The problem PHRs have faced is that the work/reward ratio is too small. People are busy and don’t want to be told they have to do more work (real, right now) for a nebulous gain (someday, maybe). I don’t care whether we keep the term “PHR” or not, though I suspect it will recede in a few years. What matters is that the tool or tools make people’s lives easier and better, not more complicated and tedious. Seamless (from the user perspective) data interoperability will do that. Pre-population with provider and health plan data will do that. Integration of your… Read more »

Merle Bushkin
Guest

Hi Margalit. While I greatly respect your understanding of healthcare IT, I must take issue with your writing about PHRs and Portals as if they are synonymous. They aren’t, certainly not as they exist and are used today. Most portals are used to refill prescriptions, schedule appointments, exchange e-mails with providers, etc. Few, if any, use them to exchange, capture, aggregate or otherwise make copies of a patient’s actual medical records, such as progress notes, available to care providers. The most widely used portal probably is Kaiser Permanente’s which reportedly is used by 3.5 million of their 8.6 million members… Read more »

Margalit Gur-Arie
Guest

“I think it’s time to finally put the idea of a global personal health record to bed, permanently.” It depends what is meant by global personal health record. If it’s Matthew’s definition of all data about a person, than we need to put it aside for now. Not to bed, just aside, because such a global data collection (single repository, or federated) does not exist, and is not likely to exist for a few more years. Building applications that presume the existence of, or ability to assemble, such data is going to fail, again. If it’s Sherry’s definition of personal… Read more »

Merle Bushkin
Guest

That’s what the self-anointed cognoscenti said about MP3 players — until Apple launched the iPod. And, going back a few years, what they said about the horseless carriage, computers, PCs, instant photography, cell phones and iPads — and many other disruptive innovations that met previously unmet needs! Nearly everyone I have talked to about having all their records from all their providers on a device they own and control, waxes ecstatic. Their first question is “where can I get one.” While my sample is far from statistically valid, one can only conclude that the need and demand are there. The… Read more »

pcp
Guest
pcp

Sounds like PHRs are a lousy product. Maybe if we paid each patient $44,000 they would use one?

Sherry Reynolds aka @cascadia
Guest

John is right and Matthew nailed it.. but perhaps it is time for everyone to shift the conversation from a noun (PHR) service (application) or even a verb – a process (communication) to a value (patient centered care). What patients (especially those with chronic conditions as well as those who are busy working parents) value is not simply access to their data and information but communication with their health care team that fits into their life and workflow, repsects their time and adds value. At large integrated systems like Group Health Coop ( 620,000 members) over 50% of all members… Read more »

Pillguy
Guest

From personal experience, to me the problem with adoption is resources to set up interoperability.

Every doctor’s office has to work on authorizing and setting up a link to every ancillary system they work with to pass data to Healthvault or similar tools. It requires patient authorizations for each instance, and is cumbersome. Doctor’s just dont have the resources to set this up for each entity, each patient.

Until there is a way for patients and doctors to check a box to send the info automatically, PHRs aren’t going to work.

John Williams
Guest
John Williams

There is now standardized interoperability between doctors offices and patients – its called Direct Exchange, and the leading EHR and PHR vendors are supporting it.

In the same manner that business data communications exploded with market adaption of standard data communications (the Internet), healthcare data communications is poised to explode with market adaption of standard health data communications ( Direct Exchange – directproject.org)

Leonard Kish
Guest

You point out some of the key issues around PHRs (and any kind of Rs). Trust (nobody trusts these companies), they lack access to the most relevant data (largely due to lack of, and willingness for, integration) and overall user experience (nobody wants to manage or manually input this data).

Perhaps naively, I still believe that with the right combination that fixes these three things, there’s still a big opportunity. To Matthew’s point, nobody’s done it yet. Trust may be the biggest hurdle.