Compelling Case for Personal Health Records (PHR)

I recently read an article (which I can’t find now) that said, We don’t log in to check our health data as much as we do our financial data. This was a pretty interesting statement considering a few days back I posted this tweet about PHR and being an active patient:
http://twitter.com/#!/techguy/status/41380840890048512

Figuring out the right motivation for someone to use a PHR has been something that’s been on my mind for quite a while. You may remember my post about requesting an appointment and sending your medical record using a PHR where I was asking some similar questions.

There’s certainly a place for software that connects patients with their doctors for things like scheduling an appointment, paying their bills, requesting prescription refills, and even doing e-visits. In fact, one of my advertisers recently launched an enterprise patient portal that has these types of features (check out this video which describes their feature set).

There’s no arguing that these types of connections to doctors are valued and something that patients would love to have. Many doctors are still on the fence about them, but I’m sure we’ll be seeing more and more of these types of services over time. However, while being really great features they still don’t solve the problem of a healthy patient wanting to log in to this portal regularly.

I think one game changer when it comes to PHR will likely be around an emerging set of devices which track our health. For example, over on Smart Phone Healthcare I recently wrote about Tracking Fitness and Activity Levels on Your Smartphone. These devices will track your steps, calories, heart rate, and sleep data and upload it to a centralized location where you can see all that data and watch your fitness and activity levels change over time. Plus, I believe we’re just getting started with collecting this type of data. You can easily see this moving to blood sugar levels, cholesterol, blood pressure, etc.

Now imagine that all of this data was available in your PHR. This type of data would be constantly updated and seeing the graphs of this health data over time is something that I’d login to check as much as I do my financial data.

Previously, I’d always been a bit down on these types of tracking devices. I’ve argued that we’re missing that link for doctors to be able to do something with the data that patients are collecting. I still think this is the case, but just because your doctor might not use the data a patient collects doesn’t mean it can’t be valuable to the patient to collect and see that data regularly. Plus, once EHR software and doctors are ready to digest the data, you’ll be ready as well.

About the author

John Lynn

John Lynn

John Lynn is the Founder of the HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.

15 Comments

  • While I applaud your fervor over the value, there is still much to be done about building a system that is sufficiently protected and sound, how and where this information is stored, controlling who has access to it, and ensuring it remains persistently accessible.

    Medical staff comes and goes, but many retain access to systems and the information contained in them after they leave. Physicians offices, clinics, labs, medical practices are NOT havens for skilled IT staff that manage access and privacy protection or data management on a daily basis.

    Many of the systems being implemented rely on vendor controlled apps and data management tools, they don’t employ serious encryption of data in transit or at rest and they don’t require two step authentication of users or ‘owners’ of the data prior to access.

    Content is backed up, which is fine for recovery in the event of an outage (it takes time, but it can typically be recovered with minimal loss) but backup is NOT data preservation… content needs to be mirrored, replicated, stored in multiple locations and protected from catastrophic losses, not simply backed up.

    Think about life in the SF Bay Area where there are earthquakes, in the Southeast where there are hurricanes and floods, in the Midwest where there are tornadoes, and even in other locations where there are wildfires or other regularly occurring natural disaster and risks. How long will data be inaccessible when these occur? How will medical professionals or patients access their PHRs, EHRs, EMRs?

    This is all ‘cart before the horse’… and speaking of horses, do you recall what happened 3 years ago when a vendor brought their laptop into a hospital, connected to their server to upgrade a system, and dumped a Trojan Horse virus into the system completely disabling critical pieces of medical equipment and access to content on servers?

    I’m JUST sayin’…

  • Hi Larry,
    First, I think you’re confusing PHR with EMR. Especially a patient centered PHR where the patient is collecting their info. Those aren’t governed by the same privacy and security standards and even if they were, many patients would still want to collect this data and won’t be afraid of sharing it.

    Also, it’s a big mistake to throw out all electronic systems because some aren’t up to the privacy and security standards. It’s just key to do your research and find ones that do meet those standards.

    Also, it’s interesting that you mention the availability of EMR and EHR software in the event of a disaster. There’s dozens of stories that I’ve seen that talk about the records being electronic as the key for healthcare organizations to get up and running quickly in the event of a disaster. Not to mention there are some really great stories that talk about whole clinics burning down and losing ALL of their patient records. I’ll take a day of down time for my EMR in the event of a disaster versus losing all of my records completely.

    We definitely need to take proper precautions in regards to privacy, security and availability of systems, but there are ways to deal with all of these issues. Not to mention we could list just as many similar issues in regards to paper.

  • Thanks for your reply, John.

    I definitely know the difference between the two- the confusion is when organizations like Kaiser severely blur the lines. They manage an EHR/EMR system that patients have regular password access to and the API is called a “PHR”. You are allowed access to a portion of the EMR to view, can schedule appointments, send messages to doctors, etc. I had personal experience with how this worked during the final 8 months of my Mother’s life, as we were her only interface. At 89, she had no computer and no desire to have one solely for this purpose, but her Doctor said “Well all of this is on-line for you to have access to, I’d have to pull it up to discuss it with you” (insert distaste button here) And there were discrepancies in the records, delays in notes being uploaded (by days, up to a week), certain departments that ‘weren’t on line’, and in one case, they had transposed numbers and we got another patient’s test results… I know this was the case because my Mom didn’t have any prostate problems.

    You’re right it IS KEY to do your research, and I wish the hospitals and medical practices making the knee jerk reactions to deploy systems would do exactly that. But as I mentioned, that’s not their forte, and when the decisions are made by IT (if they have an IT Dept), they are focusing on the technical aspects of the system, not the HIPAA requirements for managing PHI. (something else I’m intimately familiar with)

    The stories you refer to about rapid up time are isolated to specific circumstances- Look at the stories surrounding hospitals and clinics following Katrina and Rita, or other regional events that impact areas spanning hundreds of square miles. Electronic systems rely on power, mechanical storage devices, communications systems, all of which are impacted in disasters. And the more there are, the slower the recovery. Ever try to use a land line or cell phone following an earthquake when everyone is calling everyone else to say “Did you feel that?”

    The point you raise about what can happen to paper is legitimate, but that is a result of failed practices. I’ve been involved in Records Management since 1972, and have been deeply involved in the digital side since the mid 1980s, having participated in the writing of ANSI and ISO Standards on digital RM, Storage and Protection, Disaster Recovery and Vital Records Protection. What happened in those instances (like the Univ of NM Oncology Hospital) involved a failure to follow sound RM practices- essentially ‘placing all of ones eggs in one basket’ and not ensuring records were properly stored and protected from disaster. If they burn to ash, you’re right, there is no recovery… but that’s no different than a hard drive crashing that isn’t supported by a replicated or mirrored drive that writes content simultaneously and is stored a sufficient distance form the source material to ensure the same event doesn’t destroy both of them.

    But there are other incidents that happen with electronic content that are more disturbing. In 2009, on the Peninsula south of San Francisco, a contractor severed a trunk cable line, and thousands of users were unable to gain access to phones or other communications systems- the 911 service went out for 6 hospitals and 3 cities police and fire services. Or the clinics in New England that had an error in a field size and all of the data was corrupted on a transfer… or the UK disaster in the National Health system where thousands of patients records were simply erased, or the repeated stories of hundreds of patients data being exposed, like the VA Hospitals.

    I’m not saying DON’T DO IT… I’m saying PLAN FOR IT and do it successfully. Don’t get me wrong, I’m not a Troglodyte encouraging Drs. to chisel their notes into stone tablets, I’m all for progress when done in a progressive manner.

  • I’m glad to see that we’re generally on the same page. The real key is to make an educated and informed decision about what you choose. Like you said, it’s unfortunate that far too many providers and clinics don’t do this (or at least don’t do it very well). I’d say that’s probably one of the biggest goals I have for this blog is to help users become better informed about the choices they make. If I’m able to do that for some people, I’ll feel I’ve done a good work.

    There’s no doubt that people like Kaiser have mixed the terminology around EHR and PHR and other related terms.

    I think my goal of this article was to actually talk about 3 different baskets of healthcare information:
    1. EMR – Information stored and created by the doctor. This might include a patient portal which gives patients access to their records.
    2. PHR – Aggregated health information from many doctors (similar to what you might have done with your mother). Up until now, I’ve seen most PHR use only for collecting various information from the doctors and possibly some manual entry of information by the patient.
    3. Medical Device Websites – This third location is the one I’ve found most interesting recently since as I mention above, it’s somewhere that someone would probably consider checking regularly. Why these aren’t fully integrated and being used by PHR software vendors is beyond me. We know why the info hasn’t made it to the EMR’s the doctors use yet.

    I’m sure you know most of this differentiation, but I thought I’d summarize the post for those less involved in it. I believe this third category of health information is likely to be the real key to patients becoming more involved in their health data.

  • John,

    Doctors are not paid for over the phone (or on-line) prescription refills, e-visits, phone consultations, electronic communications and such. They consume lots of resources, but produce zero ROI. E-visits have many legal implications and I don’t want to go into them here. If you think these features are compelling cases, they have somewhat opposite effect among medical community, at least today.

  • Larry, John
    Lots of passion here and that’s all good! The basic problem with the EMR and the PHR is that it grew from a provider-driven mindset with no input for consumers. OMG, CCHIT for example, never considered accomadations for those with “special need” (severe and persistant mental or emotional disabilities, the frail, elderly). Once this emerging industry places a value on consumer empowerment, patient saftey, a consumer-driven model and personalized e health care technology, patient centric functionality will exist.

  • I foresee this PHRs as still in its initial evolution. Just like social networking apps, I think PHRs will evolve to become like Facebook where peple will easily and gladly “tweet” each and every point of their health condition. And this is a good thing because people will be conscious about their health condition and lifestyle. Let us not forget that each and every family has their own doctors in their house; and that is their mom (or dads) who try to fix things themselves. Imagine if these “family” doctors would be uploading a diary of their health efforts. These type of information is important for infodemiology. Instead of relying on research data to get important clinical decision database the medical industry can now tap onto the unlimited pieces of data that will be widespread onto these healt-related social networking. All of these tiny information of health data, if de-identified can be used for national or regional healthcare analysis.

    JP

  • Lack of data isn’t the problem. Doctors are drowning in data. PHRs make this much worse, especially if it can be retrospectively shown that the key to a missed diagnosis was a needle of data in the haystack of a PHR.

  • Chandra,
    There are some doctors that are making money with e-Visits. Not through the regular reimbursement channels and certainly there are potential legal implications, but we’re starting to see more doctors using this model.

    As I said in the post, these are features that patients want and doctors are reticent about implementing. Although, at some point I believe that patient demand will force doctors into doing it. Plus, the legal implications will become more clear and the reimbursement models for e-visits will catch up as well. I won’t even bring up ACO when it comes to these things either.

    Although, these things aren’t the compelling case I mention in this post. The compelling case is for other consumer driven and managed websites that will eventually merge with PHR and then to the doctors EMR.

    Jerry,
    I have to agree that PHR have been provider focused and not as much consumer focused. Although, you’re still addressing PHR from a chronic disease type perspective which still cuts out most of the consumers. I think there’s a bigger model that will attract many more consumers.

    JohnP,
    I agree. Although, I’m not sure if the data will come in the form of tweets or Facebook like wall posts. Although, a Facebook like picture upload of all medical incidents could be interesting. I guess also sickness could be interesting for data mining.

    Instead, I think much of the data uploaded will be from devices instead of from people. That will make it more granular and easier for the end user to upload the data.

    brian,
    I’m not sure which problem you’re referring to. There are many problems. This said, I believe doctors are at a point where they can’t process all the data. As you say, “doctors are drowning in data.” The systems need to do a much better job of synthesizing and sorting out the relevant data for a doctor to help them make better decisions. That’s why I found the Nuance (voice recognition and NLP) work with Watson (IBM-Jeopardy) project so interesting. I’ll be posting more about that soon.

    Of course, this is why I point out in the post above that doctors aren’t ready to get all this data from a PHR. Like I said above, that doesn’t mean that the patient can’t benefit from the data on their own. Plus, once the doctor is ready for the data, they have a whole history of information which can help a doctor understand the patient better.

  • Chandra, as a clinical social worker my passion was to create a “tool” to empower those with ” special needs” the most vulnerable in our society during a personal medical emergency. However, my business scope has took on a life of it’s own with a “technical breakthrough” considered to be “revolutionary.” Our projections are at 15 million by years end. The launch in Singapore of the web app with QR Code has drawn attention from Kenya, USA, South Korea, Japan and recently China.

  • John,
    a health person can be in a personal medical emergency and a first responder having their vital medical data will benefit all knowing if they are a doner, allergies, blood type, physician name & number, emergency contacts, etc. Will empower them while avoiding adverse events in the ER
    Jerry

  • Jerry,
    The ER’s need to be empowered with a tool to access a person’s PHR through a device like yours or something else for it to matter. Although, not enough people are forward looking enough to do that unless they have some chronic issues.

  • John,
    Our universal web app with the QR code embedded on the PHR ID Crisis Card has begun to capture the attention from a variety of health care systems and ER’s on the East coast, the NY region. The simplicity of using a smart phone with a QR code reader to scan the card for vital data by the first responder at the scene then transmit to the ER before the person arrived has exceeded the provider’s expectations. Kenya, Africa will be another launch site. This patent pending system will have a significant impact in quality outcome as will other mobile health innovations that were displayed at the Asia Summit in Singspore. Very exciting era in health care to be part of.

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