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.

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):

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.

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.)

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?

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Comments

11 Responses to “Rest in Peace: Personal Health Records (PHRs)”

  1. I essentially agree, John, that PHRs lack consumer pull. Just one correction: when I tried to move my health data into Google Health (the post you linked to), the problems that resulted were primarily caused by the fact that my hospital foolishly transmitted billing codes, not clinical data.

    That doesn’t conflict with your point in this post, but I’d assert that what I did had nothing to do with whether real-world medical information works with PHRs, because none of my actual medical data got anywhere near Google.

  2. btw, somewhere along the line I got a reputation as an avid advocate of PHRs. It’s odd, because what I actually said in my posts in March and April 2009 is:
    _______

    “I’m concluding that we can do more good by aggregating our data into large, anonymized databanks that smart software can analyze to look for patterns. Early detection means early intervention means fewer crises.”

    And I observed that the power of Web 2.0 “mash-ups” …

    …lets people create software gadgets without knowing how they’ll be used, it lets people build tools that use data without knowing where the data will come from, and it lets people build big new systems just by assembling them out of “software Legos.”

    So, I said, “I’m in.” I decided to punch the big red button and copy my personal health data into Google Health.
    _______

    I wanted to encourage innovation – I didn’t say I had no fever to enter and maintain data. (Ironically, I figured my hospital was maintaining a high quality data stream about me, and I wanted to move it out to where geek innovators could make it pretty and useful, in ways the hospital couldn’t afford.)

    However: I do know that some people very much DO want to track parts of their data. Many diabetics are in this category; so are patients and families with chronic conditions like congestive heart failure. (Sometimes it’s a family member, not the patient.) And some parents are quite interested in maintaining an online health record for their kids.

    So while I agree that PHRs per seprobably won’t ever be a killer app, I’m not sure I agree that it’s “RIP.”

  3. bhartman says:

    I think the rumors of PHR’s death are premature. I think the big companies like Google and Microsoft put a stake in the ground to see what would happen. Answer? Little. They are not going anywhere, and being on the back burner is better than off the stove. The fact is no one wants to sit at a computer and punch in field after field of boring personal health data.

    Soon someone will come up with a good mobile platform or app to do this in the ways that patients want and not in a way that is best appealing to google or microsoft. Lets face it, whan you go to a Dr’s office you want to be able to pull up your last symptoms while in the office, not before and print. Also you want to be able to enter info from the Dr’s appointment immediately, not scribble on a notepad and then transcribe that to a website.

  4. bhartman…. Sure, it’s possible. It’s also possible GM will invent the flying car. But I wouldn’t be holding my breath or betting my startup on this space (yet, investors continue to pour money to startups that are doing just that in one form or another).

    Dave’s points are well taken.

    But until PHRs are as simple as making toast (or tracking my running activity ala Nike), they simply won’t gain mainstream traction.

    • bhartman says:

      I understand your point and don’t completely disagree. To follow your metphor though, if GM builds a flying car they likely won’t go through intermediate steps like first building a jumping car, then a gliding car. The link I see between a PHR and a real EMR could go in intermediate steps and to just say its dead and focus only on the EMR to some extent discounts the patient’s desire to be involved.

      So the “death” of the PHR I think is relative based on whether one thought it was a patient sentered tool to manage their own health info and maybe share with docs, or an integrated part of the MD + Insurance + Gov’t EMR holy grail.

      Even big EMR providers like Cerner and Epic have hesitations entering the EMR space too deeply as even they don’t have the clout to establish standards.

  5. [...] The knee jerk reaction is to advocate for personal health records, but we have a problem. Rest in Peace: Personal Health Records (PHRs) The underlying problem with all PHRs today, and the problem PHRs have always had — nobody trusts [...]

  6. I never understood why P/EH/MRs have been called the next killer app. The problem was wrongly framed from the beginning.
    PHRs are not apps, they are dumb containers.

    The current lack of interest of the public in PHRs is not due to an intrinsic fault in them PHRs but more to the fact that there are few useful real apps building health intelligence by using the data held in these containers.

    • I agree, Gilles: if we presume the PHR is just the container, that’s no app.

      Otoh, in desktop publishing the “seminal app” was newsletters: people bought Macs and Pagemaker and LaserWriters in droves to do their own newsletters. Obviously the newsletter document isn’t an app, but it’s a way to “apply” all that gear.

      Similarly I wouldn’t be surprised if a lot of people are sloppy in the language: they may be thinking PHR=app as in “keeping track of your health data is something people will want to do.”

      And in that case, we’re back to what John’s post says: Not so much.

      And I agree about not many apps making USE of PHR data. Chicken / egg IMO. (Hence my affection for Blue Button as an enabler.)

  7. The one thing in common in a patient’s care is the patient. Care providers, treatments, technologies, networks and care-describing acronyms all come and go but the patient is always at the center of his or her care — which is why it makes sense to focus on creating a patient-centered health record.

    Our failure to succeed in doing so results from our approach. It has been far too narrow. We have developed apps and places to assemble data without regard for who has to do what, how it all comes together and the costs in time, effort and dollars placed on care providers and patients alike.

    What we need is a SYSTEM that makes it possible to assemble and update a patient’s records easily, quickly, and economically, and to access the records without requiring a degree in Computer Science. In short, a system that takes the work out of entering, assembling, transporting and using patient PHRs.
    * It must satisfy the needs of both patients and providers.
    * It must be easy and convenient for both to use.
    * It must be accurate and reliable.
    * It must be safe and secure.
    * It must be worth the effort and cost for both to maintain.

    IMO our objective is sound but our execution has been terrible. Hence, the remedy shouldn’t be to drop our objective. It should be to build a system that achieves our objective.

  8. CharleyK says:

    Regardless of PHR survivability, props to Ford Parsons, a second year medical student, who developed Cloud PHR app for iPhone. This free app that front-ends Google Health is a worthy example of what is possible from a selfless, patient-centric contributor. (see at http://snosrap.com/cloudphr/?r=1&p=)

  9. Hang Dauterive says:

    Thanks Karl! I hope they like it too.

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