Patient Controlled Records Could Work Internationally

A few years back at HIMSS, I had the pleasure of meeting one of the most passionate and driven healthcare people you’ll find. His name is Gerald Theis, Founder of My Crisis Records. His passion for what he was doing was undeniable and there was no way I was going to bet against Gerald getting something done in healthcare. However, I did question how many US patients would really care enough to carry around and gather their health records.

Turns out, there are dozens of companies with a vision similar to that of My Crisis Record. I’m sure that Gerald could passionately explain why My Crisis Record is different or better than any competitors, but at the end of the day the core concept is very similar: A patient controlled health record.

Whether the patient controlled health record is carried on a USB stick, linked from a QR code, stored on your cell phone, accessed in the cloud, etc the concept is the same. In many ways the patient is acting like their own personal health information exchange.

The concept is a brilliant one except for one major flaw. US people don’t care about the flow of their healthcare information. The big exception to this is chronic patients who do start caring once they get past the denial stage. However, the majority of patients in the US are satisfied with the current flow of information between doctors. Certainly their satisfaction could be based on ignorance. Many patients likely think that doctors are sharing a patients health information all the time, when in fact they are usually not.

Could this change? Certainly, but it’s hard to base a business on people changing.

What I’ve found even more interesting is Gerald’s work to implement a My Crisis Record solution internationally. For example, he’s implementing it under the brand “My Smart Health” in Africa. The more I’ve learned about international healthcare, the more I think a patient controlled record could work internationally in places where they’re more focused on providing any sort of health services versus spending big bucks on EHR systems that aren’t interoperable.

All of this is bolstered by the widespread adoption of cell phones internationally. I can see how there could be real value in a patient controlled medical record on these people’s cell phones. From what I understand, you might not go to the same doctor twice. There’s not the same view of a primary care doctor that you go to all the time that has your record at their fingertips. Seems like the perfect opportunity for the patient controlled medical record.

We’ll see how it plays out. I guess I’m not very bullish on the patient controlled medical record in the US, but I can see a lot of potential globally. Maybe over time the US will learn and change as well. What do you think?

About the author

John Lynn

John Lynn

John Lynn is the Founder of 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.

10 Comments

  • John,

    I believe that many people would love to have PHR data readily available as you described but can’t find any way to do it. For instance, let’s say someone has Microsoft HealthVault. How does it get populated with viable data? Still not many practices or hospitals that one can pull data from, and many insurance companies – if they allow extracts in a viable form, only allow it if employers pay extra for that privilege. And doing it on their own is not that helpful – it will likely be missing most test results, lot’s of prescriptions, things that the patients just forget to enter and the like.

    This ought to get better, of course, because of MU. But MU doesn’t, as far as I know, address the issue of patients actually consolidating their data, let alone getting insurance companies, practices and hospitals supporting PHRs in any viable and consistent manner.

    Ron

  • Ron,
    Let me just test you on this a little. Do people really want to see their data? Sure, if you ask anyone if they want their data, they will say yes. We all want everything we can get. However, wanting your data and actually wanting to use that data is very different.

    As I say in the post, if you’re a chronic patient, then you want the data and you want to use it. However, for those people that are healthy, do we want to look at our data?

    I’ve often thought about this for myself. I’m relatively healthy. Only been into the doctor for some cough and cold things and a few minor sports issues (sprains, etc). I basically don’t have any patient data to look at in a portal. So, why would I want to log in to a patient portal to look at nothing?

    Hmm…this could be a good future blog post. It’s the problem of “healthy” people. Maybe the solution is the quantified self tracking tools that help you get data to know how healthy you really are.

  • John,

    I am sure that you are quite correct; people in good health have far less interest in maintaining their own health records, except perhaps for those who are fanatics who want to track everything.

    As you may have guessed, I have chronic problems – in my case asthma and allergies primarily. And one family member is T1D, and another has a serious auto immune disorder. The latter in particular is part of my passion for EHR’s – I believe that treatment would be far better handled and the results understood with EHR’s with analytical capabilities. Same reason I want a good PHR capability – because that illness plus my issues demand having good data when an emergency occurs, or you move to a new doctor.

    A few years ago, the family member with the immune disorder had been scheduled for outpatient treatment at Hospital X. The night before, that person needed to get to an ER ASAP. We wanted the ambulance to go to the ER at X. But there was a bad winter storm, and the ambulance took the person to Hospital Y, in a separate hospital system.

    It took Y a few days to get sufficient paper records faxed over from X and from the treating doctor to properly care for the patient, making the situation even worse, and very wasteful cost wise. While HIE would greatly have helped, so would a viable PHR that was well populated and very readily and quickly accessible at Y. BTW, I’m not sure if X and Y are yet able to communicate (the doctor is still not live on an EHR), but I am quite sure that the EHR used in the ER at X (which the patient uses from time to time) has only minimal connections to the EHR used by the rest of hospital X.

    One of my HealthIT instructors had orthopedic work done at hospital Z, with lots of imaging. A short time later, he found himself in the ER of hospital X – which could not access any of the imaging from Z, which now had to be completely repeated. Both wasteful and dangerous.

    If HIE’s were ‘universal’, at least in the US, the need for a PHR would mainly revolve around the patient’s need to see all their info in one container, plus to get at it from outside the US if the need came up. But it would still exist.

    Ron

  • Thanks for sharing R Troy. I’d like to use this in a future post which makes a great case for why chronic patients value interoperability of healthcare data even if it’s done by them in a PHR.

  • John,

    Sure. Keep in mind there are 2 variations here. 1. The person who’s comfortable with computers, cloud storage and the like, who likes to have tight control, and 2. Those who have no clue on what computers and networks can really do, or can’t handle it themselves, but know that they need their data available. Either way, both approaches have great value. A day should come when a great many people will have well populated PHRs that they can use to make themselves healthier, but also when, in case of an emergency, they don’t have to worry that the ER they land in doesn’t have the information they need for treatment!

    Ron

  • Realize guys, it isn’t just the healthy who have a much lower interest in a PHR.

    There is also a very large group of people who, whether healthy or not, just don’t care about their health or being healthy.

    As I’ve said many time, the number of people who really care to have “instant” access to their medical records is very small.

  • John,

    Like so many other things, many people don’t care about access to their PHR until it costs them dearly. A medical emergency where things go badly because of the lack of access to records, or where all sorts of tests or even treatments occur because of that lack. People in the US can be amazingly apathetic around many of their self interests. And ignorance abounds. It seems to me, though, that medical providers need to help lead the way towards more interest by patients in their own data – what I see as a major point of MU. Insurance companies should also take a much bigger role in pushing patients to care – because there’s a huge amount of waste that results from not having the right records at the right time and place. People may not understand that their own ignorance and apathy can be very costly.

  • I believe the shift to a consumer-driven model will be the key driver as consumers seek to become empowered by using an interoperable mobile PHR. The chaos with Obamacare has created a sense of loss of control and vulnerability with higher deductibles and copays. A personal medical emergency event with a PHR would avoid unnecessary diagnostic test and adverse events especially when out of network.

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