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emr

What if there was an EMR built on Wikipedia?

WikiEMRI’ve been thinking about EMRs, electronic medical records, lately. It’s a subject, despite some professional experience, I don’t feel particularly close to. In fact, if anything, they are a source of consternation. As an industry insider, I see them as an expensive albatross around our collective neck. As a human centered design advisor, I see them as an encumbrance for both providers and patients. And, as a patient I see them largely as an opaque blob of data about me with a placating window in the form of a portal.

Which makes me wonder, am I obsessed with EMRs lately?

One of the reasons is certainly my personal interest in technology. And, while I don’t work in health IT, it’s natural to draw some connections. For instance, Wikipedia is consistently in among the top 10 most visited internet sites ( it is currently number 6 ). And, say what you will about citing Wikipedia, but a 2010 study found it as accurate as Britanica. Google trusts Wikipedia enough to use it as the primary source for its knowledge graph cards; and we’ve all settled a bar bet by finding some fact where a Wikipedia article is the canonical answer.

The secret sauce for Wikipedia is in it’s roots. Literally, the root of its name, wiki, describes the underlying structure. Wikis were the internet’a solution to knowledge bases – large repositories of information about a process or thing. Companies had been using knowledge base software for years. Traditionally, a central maintainer, often a sort of corporate librarian, curated information, such as common answers to customer questions, so customer service reps could find it quickly.

Wikis democratize the knowledge base by allowing anyone to edit an entry. If you work for a company which sells widgets and you discover a new way to service the widget, you simply amend or append to the record in the corporate wiki. But what about the corporate librarian, they all cried. Except, no body cried.

It turns out, the network effect and the wisdom of crowds produce richer, more accurate databases of knowledge when the literal barrier to entity is removed. Make it easy for anyone to input knowledge, and the database and its accuracy grow. And so it came to be, since anyone can edit almost any entry in the largest encyclopedia the world has ever known, Wikipedia is remarkably current and accurate.

So I wonder…what if medical records worked like Wikipedia?

What if, my record lived on some commonly accessible platform; not open to anyone, but accessible by my providers and I? Maybe we have to do some kind of online handshake to mutually access it.

What if we could both edit the record, at the same time? My doctors could put in their notes and I could add my own. Or I could edit theirs. And they could edit mine.

Some readers may have concerns about the records’ integrity but as patient advocacy expert Trisha Torrey points out reviewing our own medical records can help spot and fix errors. And, as we know from Wikipedia, more eyes and contributors on a record increase its accuracy and reliability.

Another important lesson from Wikipedia is the idea of revision log, which Wikipedia calls page history. Any registered user can make edits to almost any record in Wikipedia’s vast online encyclopedia. Every time an edit is made the changes are logged, including the name of the user who made them. Anyone can review the changes and roll back some or all of them, or make additional changes of their own.

Imagine a medical record platform where patients can review the entries made by a doctor, and if appropriate make additions at it or even changes. For instance, after reviewing notes from my last physical, I discovered a small unimportant inaccuracy in my record. I take Vitamin D supplements, and in the record, it was noted that I take Vitamin E. Big deal? Probably not, but what if it was related to a prescription medicine? Providers are human and, as we know, to err is human, but by allowing patients to review and edit their own records, they would be able to fix errors.

A Wikipedia-style EMR would also better allow for patient-contributed data. There are often symptoms, observations or measurements which patients observe outside of the timeframe of a visit with their doctor: a week of poor sleep, a month of improving blood pressure measurements, an off-again, on-again skin rash. These kinds of things may not even warrant a phone call, but wouldn’t it be nice to log them directly?

Finally, and this may perhaps be my strongest argument for a Wikipedia-style EMR, we’ve got to do something about data exchange. Color me cynical, but I’m not convinced the health information exchanges (HIEs), offered by the major EMR vendors as well as technology giants such as Oracle, are the answer. Each EMR vendor has a financial incentive to keep their data in a proprietary format. Further, their customers are, by definition, the providers, not patients.

No, what we need instead is a common, centrally accessible platform where patients and providers have parity, equal footing. No one party’s observations, notes, measurements, or data trumps the other. A common platform would make it easier for different providers to openly collaborate, in front of the patient, virtually, in a common record. Your specialist could be literally updating the same records which you, the patient, are adding to while your primary care doctor is also reviewing and making edits. Dogs and cats, living together. Mass hysteria!

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And there’s an extra credit reason we need a Wikipedia-style EMR. It doesn’t just promote or enable patient empowerment, it demands it. Owning our own data requires responsibility. It becomes the patient’s garden to tend. And its our right to tend those gardens.  Stephen Ross and Chen-Tan Lin, writing in JAMIA, concur:

Overall, studies suggest the potential for modest benefits (for instance, in enhancing doctor-patient communication). Risks (for instance, increasing patient worry or confusion) appear to be minimal in medical patients.

This doesn’t have to be a pie-in-the-sky dream either. Someone could build a WikiEMR today. The platform which runs Wikipedia is called Wikimedia. In fact, it would likely meet all of the Meaingful Use Stage 1 requirements…except one, and could be regarded as HITECH-compliant:

  • Anyone can download it, or install it on a hosted server. It can use the same strong SSL encryption which protects Epic, Allscripts, Athena and McKesson platforms.
  • It is free (a substantial discount off the price tags stuck to the EMR giants).
  • It provides user access audits and record edit history.
  • It is accessible via mobile and desktop
  • It can use multi-factor authentication
  • Wikimarkup, the simple language used on Wikimedia sites, supports mathmatical calculations so a WikiEMR could do unit conversions, Boolean checks, and data aggregation and reporting (including graphing).
  • It can generate reports for the MU core measures including abstracting 14 core objectives, 5 out of 10 of the menu objectives, etc.

What one, small, requirement is missing? As far as I know, Wikimedia is not a certified EMR. Anyone want to start a fund drive?

Evernote Is My EMR And Its Better Than The Rest

EvernoteEMRSpoiler alert: I’m not dying and there doesn’t appear to be anything major wrong with me.

I know, you hate spoilers. But I thought I’d get that one out of there way. It makes the rest of this considerably more pleasant for us both.

I’ve got a new personal electronic medical record. I’m able to store and track my health history. I can add and edit my own notes. I can pull in data from external sources like my quantified self gadgets. I can share data with my provider, or family members. It’s secure, it’s cloud-based, it’s mobile and it’s on all major platforms.

Evernote is my personal EMR.

For the uninitiated, Evernote is a cloud-based, free service with apps on every major desktop and mobile platform. It’s general purpose is to store, sort and help you find anything you throw at it. You can upload a PDF, email a note, clip an image from a website. You name it, and Evernote can probably store it. Take a picture of a wine label, and Evernote will transcribe the text in the image using optical character recognition, so when you search for Zinfendel, you’ll find the image of the wine bottle. But wait there’s more. Since you took the picture with your phone, Evernote also has the gps data, time and date attached to the image. You can add some tags such as “California”, “zin”, and “jammy” to make the note even more specic and personal.

Evernote has a widely supported API (applications programmers’ interface), so many other apps can read and write data into Evernote. For instance, the web-based automation service if this then that, IFTT as it’s known, will, for instance, append a line to an Evernote note every time you get a tweet; creating an effective backup solution.

I personally throw everything I can into Evernote. When I book travel, and the print window pops up over the itenary confirmation, it select PDF to evernote rather than print. When an online store emails me a receipt, I forward the email into Evernote. I have more IFTT rules logging things to Evernote than I can feasibly recount, but a few stand out. When I step on my Withings wifi-enabled scale, IFTT adds a line to an Evernote note with the date, time, my weight and body mass data. I can do the same thing with my Withings blood pressure cuff. And, it turns out, Evernote is pretty much perfect as a personal EMR.

In short, I get a lot of meaningful use out of Evernote.

Recently I was asked to get an MRI (see above re spoiler). I had the MRI done at a health system an hour away from my home. The system uses Epic and has the MyChart patient portal available. My primary care doctor also works for a system which uses Epic and has MyChart. But these two Epic installations might as well be separated by led walls. My PCP ordered some labs, that the other doctor needed and my PCP, in turn, wanted a copy of my MRI results. So one doctor calls me and says can you please print a fax to us the lab results. Mummmm, ok. It’s 2014 and I, the patient, am transmitting my own clinical data between two systems via analogue fax? Then my PCP wants a copy of the MRI results. Same problem. I am again reduced to data mule. I am Jacks health information edchange

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So now we have two identical multi-million dollar EMR installations, each with some data about me, but neither having a complete picture or seamless interchange. Again, I’ll point out that this is 2014 and I can FaceTime someone around the world on my phone. And we’re using faxes?!?

But there is one place where I have a complete record of my health and health-related behavior. You guessed it, Evernote. Everytime I have a test done, I get an email from which ever isolated multi-million dollar Epic system at which I’m seen. I log in, and click a button on my web browser tool bar which instantly clips the entire page as both text and image and stores it in an Evernote notebook called Health.

The images from my MRI? They are in Evernote.

Last year, before my annual physical, I decided to eat my own dog food. I started a new note in my Health notebook called health observations. I captured the little things I wanted to remember throughout the year: an ache here, a reminder that I saw a physical therapist, a picture of the vitamin D supplement I started taking… Before my physical, I typed out an agenda in an Evernote note:

  • Review observations note
  • show picture of all supplements and capture into med reconciliation list
  • review journal article on psoriasis and glycerine and why I’m not using prescription steroids anymore
  • ask for opinions on nutritionalists

When I went into the physical, I let my physician do his HPI and med rec and then mentioned my agenda. He knows me well enough to find the humor in my proposal - hey, it’s pretty nerdy - but he graciously went along with it. He did his physical exam and then tuned control of the visit over to me. I asked if I could record the audio and did so using Evernote’s built in audio recording feature.

I also scan, or import PDFs of all my insurance data including EOBs (explanation of benefits). I scan medical receipts and co-pays. So I effective also have a rudimentary revenue cycle system.

I am nearly certain, today, Evernote has a more complete, more personalized view of my health and medical history than any other system on the planet. I can share entire notes, or their contents, via secure links to anyone I chose. I can automate data intake, or enter it manually. I can capture fitness and behavior data. I can trend, search, snapshot, and review my own medical records. I can add to them any time I want, from any device.

Please tell me why a multi-million dollar system is more patient-centered?

Vail's EpicMix, an innovative model for healthcare data

I'm not a huge fan of what I call blatant marketing. You know it when you see it, particularly with interactive campaigns online. You want me to do what? Like this page, give you my home address, and retweet your link for a chance to win an iPad? No thanks. I avoid frequent shopper cards at the grocery store for the same reason. When Vail Resorts launched Epic Mix last year, I was skeptical. Vail wants to track every move you make, literally, on their mountains. Vail installed RF chip readers in every lift line and started putting RFID chips in their lift tickets. You go through a line, and they know it. They also know your age, gender, address, family members and travel dates. With the tracking and demographic data, they have a pretty good idea about your habits at their resorts. You can even tie your credit card to your ticket for on-mountain purchases. I imagine the database thinking something like this (you know, if databases could think):

The Jones family starts skiing at 10am most days. Not surprising since they are from the East coast and have the time change. The kids are both in ski school today ... cha-ching! Oh look, mom and dad just stopped for lunch at the high end restaurant and the kids are eating pizza at the casual on-mountain restaurant. Mom skis black diamonds mostly and is logging 2x as much vertical as dad. They seem to come out every year around the same two weeks. Judging from their address, I bet they make about $110,000 a year and take two major vacations. We should email them a month before, I'll make a note of it. I wonder if they'd want a time share....

Pretty spooky huh?

So what did Vail do to change the value proposition of their data capturing? They launched EpicMix, a customer facing portal into the data. You sign up and register the ID number from your lift ticket. From there, things get social very fast. There is a FourSquare like game component where you earn pins - just like the real pins you see on people's hats or jackets - for accomplishments. Ski 26,400 feet and you get the 5 Miler pin. Head into the Northwoods area and you get the Gone Wild pin. The service also tracks your runs and vertical feet per day and season and lets you compete against friends and family. There's even iPhone and Android apps to track your stats in real time. And, of course, it all connects to Facebook and Twitter.

This year, Vail gave professional third party photographers the boot. Now, Vail's own photogs hang out near huge EpicMix Photo placards around the mountain. Ski up, and they scan the RFID tag on your ticket and snap a few pics. That evening, the pictures are uploaded to your EpicMix account and can be shared on Facebook or Twitter for free.

Vail took customer tracking and turned it into a value added service. It's a draw, something Vail's resorts have which other ski areas don't have.

It will come as no surprise I see a healthcare analogue in all of this. Rather than capture data about customers and keep it to themselves, Vail turned it into a customer-facing service. Does your doctor treat your medical records the same way? Can you go online and look at them? Do you get rewarded, even virtually, for losing those 10 pounds or controlling your asthma? Can you chose to share parts of your record with family or friends?  Can you chart your A1C scores over time?

Even with the rise of patient access into electronic medical records,  we've still got a ways to go before we reach the same level of understanding about personal data. I continue to see consumer devices and services leading the trend, which tells me two things: 1) people do want to own, collect, monitor and selectively share aspects of their health and 2) the consumer oriented companies can do it for cheaper. The later is likely owed to less red tape, regulations, research, etc. To be fair, there are iPhone apps which will graph your weight. And there are iPhone apps which will track your skied vertical feet. But the value of that data changes when it's shared with your provider (not that it has to originate with them, mind you).

Any thoughts? Are you aware of any provider organizations who are going beyond MyChart (an example of a patient EMR portal) and offering value added analysis and services on top of YOUR health data? What kinds of things would you want to see, beyond direct, unfettered access to the record?

By the way, according to my EpicMix dashboard, in the last 12 months, I've skied 121,453 vertical feet at Vail resorts... not too shabby for busted knees!

Since I've basically given Vail a free ad, I might as well embed their EpicMix video, it explains the service pretty well:

someone build this: put my tweets in my health record

There is a great deal of attention these days to the concept of electronic medical records (EMR). Sometimes we refer to them as electronic health records (EHR) or even personal health records (PHR). While there are semantic differences between each, the idea is the same: a complete, portable electronic snapshot of your health. At least that is the idea. In practice today we are really talking about an electronic record of your medical history. (notice I left out portable, complete and health). Enter the idea of accountable care. Many industry experts are already envisioning a near future when providers will move from reaction to proaction. Rather than being paid to treat the symptoms that walk in the door, doctors may get paid for keeping you out of the office. A practical example is obesity. Instead of being reimbursed to treat the side effects of obesity (asthma, diabetes, joint pain, etc), a doctor may get paid for helping a patient achieve a healthy lifestyle and losing weight.

There is still something missing from this equation. And that is where your social graph comes in. A lot of us do healthy things all the time. According to Foursquare, the geolocation based social network, I have "checked in" to my gym 57 times since early March. I have gone to the farmer's market 15 times this year. I have attended four medical education seminars (ok, those were work-related, but I still learned something). Here's the rub, my doctor doesn't know any of that. If he is going to be responsible for my complete health, shouldn't those things factor in?

So, continuing my "someone please build this" series of blog posts, here is my latest plea: someone please build a conduit between my social graph and my health record. Let me opt in and chose which things I share online which should also go into my EMR to become available for anyone treating me. Tools like Foursquare come to mind as an obvious choice. Since it is based on location, it takes some of the effort out of participating; it just knows where you are. So when I check in to the gym, wouldn't it be great if my health record was updated too?

My good friend and HCSM guru, Dana Lewis pointed out the power of twitter hashtags. What if we were able to define a specific, personal tag, say #NicksHealth. Every time I want to include a twitter update in my health record, I tag it with #NicksHealth. Last week, I had surgery on my knee to repair an ACL injury. Every day for the first week, I took a picture and loaded it into Flickr, the social photo sharing site and posted a link to the picture to Twitter. If I were able to tag it with #NicksHealth then my doctor would have a series of images showing the progression of my range of motion, wound healing, etc. When I update my Facebook page with details from physical therapy, that information could populate my medical record, along with my Foursquare checkins - my doctor would see just how compliant I have been with his rehab orders.

It doesn't all have to be healthy. Providers need a complete snapshot of our lifestyles if they are going to suggest a course of care. Perhaps through incentives, competition or other means, patients may be encouraged to also share things that are less healthy. "I ate a burger tonight, with fries…and bacon…lots of it. #NicksHealth" - My doctor should probably know how often that happens in relation to my trips to the gym.

There are, of course, some challenges to this idea; including the burden of combing through all the data. Physicians may already feel like they have information overload. Without an accountable care model in place today, there is not much to entice them to pour over patients' social graphs. In time, we will also need software that can automatically sift through the updates and present them in a meaningful way to physicians. However, the first step remains building the connection.

Every major social network has an API, or Application Programer's Interface. APIs are a way to move data into and out of systems. If you use a twitter client like Tweetdeck or Twitter on your iPhone, you are using the Twitter API. Health providers, when considering their online offerings, would be wise to build in API functionality to online health portals.

Let people chose which data they want to share with their medical record. Providers can incentivize participation through reduced co-pays, social competition, etc. In return they get a rich flow of lifestyle information. When accountable care, meaningful use, EMRs and social graphs come together it will be a win for us all.