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Cracking Open the Shell on the Personal Health Record

Posted on November 5, 2014 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://radar.oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The concept of maintaining your own health data enjoyed a brief flurry of activity a few years ago with Google Health (now defunct) and Microsoft HealthVault (still active but not popular). It has gotten a second chance with Apple HealthKit, Google Fit, and other corporate offerings explicitly tied in with the convenience of mobile devices. Microsoft itself has galvanized HealthVault with a Microsoft Health initiative similar to Apple’s HealthKit. Recently I’ve been talking to health care reformers about the business and political prospects for personal health records (PHRs).

Patient access to data was enshrined as a right back when HIPAA was passed and is still championed by the US government through Meaningful Use (whose Stage 3 may well focus on it) and other initiatives, and has been endorsed by the industry as well. But this requirement won’t be satisfied by the limited patient portals that hospitals and clinics are hanging out on the Web. Their limitations include:

  • Many provide only viewing data, not downloading or transmitting it (all of these are mandated by Meaningful Use).
  • Data maintained by providers can’t easily be combined into a holistic, comprehensive view, which is what providers need to provide good care.
  • Data on portals is usually a thin sliver of all the data in the record: perhaps prescriptions, appointments, and a few other bare facts without the rich notes maintained by clinicians.
  • You can’t correct errors in your own data through a portal.
  • Clinicians rarely accept data that you want to put in the record, whether personal observations or output from fitness devices and other technical enhancements.

All these problems could be solved by flexible and well-designed personal health records. But how does the health care field navigate the wrenching transition to giving people full control over their own data?

Dr. Adrian Gropper has investigated PHRs for years and even considered building a simple device to store and serve individual’s health data. Now he says, “I can’t recall any physician in my medical society that has ever said they wished their patient had a PHR. Nor do I, after many years on the Society for Participatory Medicine list, ever recall a patient praising the role of their PHR in their care. Today’s PHRs are clinically irrelevant.”

This is not a condemnation of PHRs, but of the environment in which vendors try to deploy them. Many health reformers feel that several aspects of this care environment must evolve for PHRs to be accepted:

  • PHR data must become appealing to doctors. This means that device manufacturers (and perhaps patients themselves) must demonstrate that the data is accurate. Doctors have to recognize value in receiving at least summaries and alerts. Many benefits can also accrue from collecting vital statistics, behavioral data, and other aspects of patients’ daily lives.
  • The doctor’s EHR must seamlessly provide data to the patient, and (we hope) seamlessly accept data from the patient–data that the doctor acts on. Currently, most manufacturers store the data on their own sites and offer access through APIs. Another programming step is required to get the data into the PHR or the doctor’s EHR.
  • Clinicians have to agree on how to mark and collect the provenance of data. “Provenance” deals with assertions such as, “this data was generated by a Fitbit on October 10, 2014″ or “this diagnosis was challenged by the patient and changed on August 13, 2010.”
  • Add-on services must make the data interesting and usable to both patients and physicians. For instance, such apps can alert the patient, clinician, or family members when something seems wrong, let them visualize data taken from the PHR and EHR over time, get useful advice by comparing their data to insights from research, and track progress toward the goals they choose.

“A critical force in increasing consumer engagement in digital health is the development of compelling, easy to use tools that make it simple to collect, understand and use health information to reach the goals consumers define for themselves, whether that’s managing a chronic condition, saving money, or fitting into their ‘skinny jeans’,” writes Lygeia Ricciardi, former director of the Office of Consumer e-Health at the ONC. “In an age of ‘one click purchasing,’ it must become incredibly easy for patients to access and share their own health information digitally–if it’s too complex or time consuming, most people probably won’t do it.”

In addition to sheer inertia, a number of disincentives keep PHRs from congealing.

  • Many doctors are afraid of letting patients see clinical notes, either because the patient will ask too many questions or will be upset by the content.
  • Hospitals and clinics want control over records so that patients will return to them for future treatment.
  • Marketing firms live off of rich data lodes on our health data.
  • Other organizations with dubious goals, commercial and governmental, want to track us so they can deny us insurance or control our lives in other ways.

Wait–what about the patients themselves? Why haven’t they risen up over the past several years to demand control over their data? Well, maintaining your health data is intimidating. The data is highly detailed and full of arcane medical concepts and terminology. Most patients don’t care until they really need to–and then they’re too sick and disabled to form an effective movement for patient control.

Still, several leaders in health care believe that a viable business model can be built on PHRs. The spark of hope comes from the success of apps that make people pay for privacy, notably SnapChat and Whatsapp. Although some sloppy privacy practicies render these services imperfect, their widespread use demonstrates that people care about protecting their personal data.

Private storage can be offered both in the cloud and by personal devices, using standardized services such as Direct and Blue Button. These will start out as high-end services for people who are affluent and have particular concerns about storing their own data and choosing how it is shared. It will then become commoditized and come down in price.

What about people who can’t afford even the modest prices for cloud storage? They can turn patient data into a civil rights issue. There’s a potent argument that everyone has the right to determine who can get access to their health data, and a right to have data generated during their daily lives taken into account by doctors.

We don’t need one big central service–that’s insecure and subject to breaches. Multiple services and distributed storage reduce security risks.

We’ll see change when a substantial group of people start to refuse to fill out those convoluted forms handed to them as them enter a clinic, saying instead, “Get it from my web site before you treat me.” Before that protest begins, there’s a lot of work in store for technologists and businesses to offer patients a usable record system open to the wide range of data now available for health.

What Should We Make of Google Health’s Failure?

Posted on June 26, 2011 I Written By

Katherine Rourke is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

So, Google Health’s slow collapse — akin to a tire with a slow but obvious leak — has finally come to an end. This week, Google officially ended the project, one of the pioneering efforts in the Personal Health Records space. While GH will stumble along through January 1, 2012, the jig is finally up.

Why did a high-visibility project backed by one of the world’s premier Internet companies fail so miserably? Well, according to former Google employee Adam Bosworth, who first launched GH, the effort failed because “it’s not social,” TechCrunch reports.  Another pundit, more convincingly, argued that unless PHRs are tied to reimbursement somehow, they’ll be “irrelevant” for most providers.

So, why should we care about the failure of a project that, I’d argue, was pretty much pie in the sky from day one? And more importantly, is the failure of GH relevant to people who care about the future of EMRs?

Well, for one thing, Google Health does offer some pretty interesting insights into what doesn’t work in the world of patient-centered clinical data. As I see it, they include the following:

*  Clinical data projects that aren’t interoperable are eventually going to wither away.

I think it’s telling that Google is, at the last possible moment, rolling out the ability for patients to transfer health data to other services supporting the Direct Project protocol.  Also notable is that Google is offering patients the option of downloading data that meets the Continuity of Care Record format. (That’s ASTM E2369 – 05e1 to any standards geeks out there.)

Does that imply that EMRs that don’t share data are going to be outmoded or a waste of time?  Certainly not, as EMRs can potentially solve many in-house problems that providers face, and serve a far more expansive purpose. That being said, the failure of siloed PHRs should be a warning.

* Without a live, fluid source of data, PHRs don’t matter.

In this cynic’s mind, the idea that patients would suddenly begin to post data to PHRs on their own was, to put it simply, pretty dumb.  Why would they?  Consumers seldom think about their health data unless they’re at a doctor’s office, if at all, and they don’t exactly know what do do with the data once they’ve compiled it.

Since day one of the PHR craze, I’ve been wondering who thought they’d change patient behavior en masse by dangling a technology carrot. What were they thinking? I’m not just slamming Google, I’m targeting pretty much any PHR that isn’t linked to an EMR or other clinical data source directly. (I’m talking about you, HealthVault, and probably Dossia too.)

* PHRs must be run by a trusted intermediary, and marketed vigorously to patients, before patients will take heed.

I think it’s no coincidence that while Google’s PHR, and possibly Microsoft’s, haven’t won over many consumers, patients are beginning to pay a bit more attention to PHRs provided by providers and health insurers.  (OK, I don’t have hard data on this, just a strong gut feeling — can any of you provide stats that support or contradict this assumption?)

A case in point: While they’ve arguably spent way, way too much to get there, Kaiser Permanente has built what may be the largest PHR user-base in the world — 3 million users as of spring 2010 — linked to KP’s big Epic installation.  True, Kaiser had to spend millions in advertising and other forms of outreach to get patients on board, but what’s telling is that patients seem to have stayed once they arrived.

So, I’m just wondering when the managers behind HealthVault will throw in the towel. Hey, MS, just turn out the light when you leave, OK?

Google Health Resets…errr…Put on Ice?

Posted on May 12, 2011 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

The always insightful John Moore (so many great John’s in Healthcare IT), posted a great blog post back in September of 2010 about Google Health hitting the reset button. The post was interesting as it tried to show Google Health going in a new direction. The irony was that almost a year ago John had posted about Google Health’s irrelevancy in the PHR market.

Despite the up downs of Google Health, today John put Google Health in Stasis. He sights a great list of yellow and dark orange flags that are a bad sign for those who love Google Health. Here’s one section from his post:

Beginning in late March 2011, we started hearing the rumors of the impending demise of Google Health once again (is this becoming some sort of annual thing with Google Health?). We waited a few weeks to see if the rumors would die down, they did not. We put a call into Google Health to set up a briefing, get an update. Response back was slow (one yellow flag). When they did get back to us, they said it will be at least a couple of weeks (two yellow flags). Next, our Google contact told us by email that they were going to hand Chilmark’s inquiry off to Google’s PR department (screaming dark orange flag). And now today, we received an email from one of Google Health’s most visible spokespersons, Missy Krasner that she is leaving Google.

He then projected that we shouldn’t “expect anything new out of Google Health for at least the next 5 years.” That’s quite the projection. However, I’d take it one step further. I don’t expect to see anything really mainstream out of PHR software for another 5 years either.

I do think that PHR software is going to have a strong showing in chronic patients. I could also see an interesting niche in secondary caretaker healthcare management using a PHR (I’ve got an interesting announcement about baby boomer healthcare coming soon). I definitely want an online means for tracking my parents healthcare. Not to mention, then all of my brothers and sisters could participate as well. A few other niches are likely to be successful as well. Not to mention, other consumer PHR-like applications for healthcare that will become popular like the Nike+.

PHR Model At Turning Point

Posted on March 26, 2011 I Written By

Katherine Rourke is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

So,  Google is going through some internal upheaval as co-founder Larry Page prepares to take over the reigns as CEO.  According to an piece appearing in today’s Wall Street Journal, Page is aggressively reviewing existing projects and is likely to take an axe to those that don’t seem to be working. Does it surprise any of you that one of the programs facing cutbacks may be Google Health and its faltering PHR?

As HIT expert Shahid Shah notes, Google has created some decent PHR technology — but despite having a vast reach and rich resources, hasn’t figured out how to grow its user community.  Even with its massive bank account, I’m not surprised to see that it hasn’t turned healthcare into a major income source. Google just isn’t that great at going outside of its box.

Then, consider that Microsoft doesn’t seem to be pushing Health Vault very hard these days, and you’ve got to wonder whether the whole “massive tech company builds PHR” thing can possibly work.   Yes, I realize I might get flamed by Microsoft execs saying this, but let’s get real here.  Microsoft isn’t great at connecting to markets it doesn’t monopolize either.

Oh the other hand, evidence is mounting that PHRs may be popular when driven by a provider and its own EMR.  Perhaps the highest-profile example of this may be Kaiser Permanente’s EMR/PHR ecosystem.  Its “My Health Manager” PHR system is closely integrated with its Epic EMR installation and now has millions of users.

Why is Kaiser succeeding at generating PHR interest where Google has failed? It’s largely because rather than offering a mixed bag of apps and options, as tech vendors have been doing, My Health Manager allows patients to securely exchange messages with physicians, refill prescriptions, review test results and schedule medical appointments.  Patients aren’t being asked to become updater and curator of their medical information, but rather, to use it. This just makes sense.

As I see it, the whole notion of a PHR as a freestanding app is basically circling the drain.  Realistically, patients have little incentive to interact with their health data unless it has some immediate impact on their lives.  An EMR/PHR combination, on the other hand, has tremendous potential, as it connects patients to both their providers and their health data effectively.  If I were Microsoft or Google, I’d just throw in the towel at this point.

 

The Demise of Google Health and Consumer PHR

Posted on May 31, 2010 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I was really interested to read John Moore’s post about the irrelevancy of Google Health leading to its demise. It’s a great post that’s worth a read for anyone interested in the PHR space and in particular Google’s participation in healthcare. I’m a little reticent to bet against Google, but the lack of commitment on Google’s part to healthcare says something. I mean, Google has quite a bit going on with cell phones (Android), web browsers (Chrome), and operating systems (Chrome) just to name a few. You can see why Google Health isn’t high on their priority list. Oh yes, and of course they still have to maintain their dominance in search and all the other products they have (gmail, google docs, calendar, etc etc etc).

With that said, some of the most interesting things were found in the comments of Chilmark’s post. Here’s a couple excerpts:

My college health class used car upkeep as a metaphor for how we take care of our health. With my car, I know I should pay more attention to everything: it’d probably run better if I looked at it more, kept up with the latest from my manufacturer (hey, actually read my owner’s manual).
But honestly? I’m just as happy to pay a mechanic to keep track of what I need, when I need it. The money I pay is as much to escape the tedium of keeping up with all that knowledge as it is for the service itself. I’m willing to bet a lot of people feel that way about health: they probably believe they should be involved, but when push comes to shove they’d rather just pay someone else to worry about it.

This rings far too true. We care, but not enough to really care (at least until we really need to care).

I belive what we are seing here is the end of the B2C direction for PHR. John Moore was the 1st to say that PHR is for B2B model. Google designed it’s solution for B2C (login to data through Google). this was wrong. if you see real addade value apps in the market they are offred as B2B under Microsoft HealthVault.

PHR = B2B Very important lesson learned.

Mayo Clinic Launches PHR Available to Anyone

Posted on May 14, 2009 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Here’s the story from the American Medical News:

The Mayo Clinic announced the launch of a new personal health record system that will be available to anyone, including those who are not Mayo patients. Those involved with the project say the system, powered by Microsoft HealthVault, could also carry benefits for non-Mayo physicians.

Is it just me, or is my headline (which is theirs also) really misleading? When I saw the headline I was really interested to see the type of PHR that Mayo Clinic had created. Instead, all they’re doing is adopting Microsoft HealthVault. That’s a big win for Microsoft HealthVault, but that’s been publicly available for a while. I’m not sure why Mayo Clinic joining HealthVault makes it any more available to those outside of Mayo.

The more interesting part of the article is when they talk about Mayo Clinic moving forward despite Beth Israel Deaconess Medical Center in Boston stopping claims data from being sent to Google Health:

The launch of Mayo’s system came days after Beth Israel Deaconess Medical Center in Boston announced it would stop sending claims data to patients’ Google Health accounts due to the possibility that the data contain errors. The move reignited the debate over whether PHRs can contain too much data that is not useful to physicians, or dangerous for them to rely on.

Mayo’s system will allow the import of claims data through Health Vault, but Mayo’s physicians will likely not use it, the organization said. Other patients and their physicians can choose whether the information is relevant enough to be kept.

I’d still like to see better support for PHR in various EMR and EHR products. However, until there’s a good standard I don’t expect that to happen anytime soon.