Digital Health Data vs. An Analog Memory
from the the-possibilities-are-endless dept
What started as a quiet evening one recent Saturday ended with a multi-hour visit to my local emergency room.
It was a relatively “vanilla” visit for a suburban ER ? I walked away with multiple stitches and a bruised ego. But I received one service I probably didn’t need, reminding me we still have a long way to go before the great potential of digitized medical data is realized.
I received a tetanus shot that I’m almost certain was unnecessary. However, all the evidence against getting the shot lay only in my memory. While there are likely several records of my last tetanus shot in multiple, siloed databases, not a single one was within my reach when I needed it most.
Of all people, given my career and the passion I have for the tech sector, I should have been ready for this. In an era when health and medical data are increasingly digitized, my information shortfall that night was easily and entirely avoidable.
“When was your last tetanus shot?” the ER doctor asked me. As I fumbled to recall with exactness the particular date, time and place, he jumped in, “Sounds like it was tonight.” Moments later, the nurse strolled in and administered the shot.
I’m almost certain I got a tetanus shot before I went to Nigeria in 2014…or was it when I went to Ethiopia in 2013? Despite my inability to recall the date with precision ? surely, it’s been in the past 10 years, hasn’t it ? that information is available somewhere.
My insurance company knows. The clinic or doctor’s office where I received the shot surely digitized the details. But that Saturday evening, we weren’t able to access any of this digitized information. I’m looking forward to the day, fast-approaching, when that changes.
We’re in the midst of a revolution in personal health, thanks in large part to consumers’ enthusiasm for wearable fitness activity trackers. Sales of health and fitness trackers continue to rise with an ever-expanding suite of wearables. Health and fitness apps and devices let us capture, collect, manage and better understand our own medical data in unprecedented ways. And when we can control our own health records, we are better informed when we go to the doctor’s office or the pharmacy or, in my case, the emergency room.
Technology also enables us to share diagnoses and test results, seek second opinions and shop for less-expensive care. The more information patients have, the more invested we are in our own care ? and the better we can serve as a “safety net” for our doctors’ potential oversights or lack of information.
Consider the extraordinary case of the woman who served as her family’s caregiver when her father was admitted to the hospital unexpectedly. Doctors wanted to give him a blood-thinner drug that their outdated records indicated he was taking. The woman pulled up her father’s medical records using an app, BlueButton, which showed that he had been off the blood thinner for two years, so none was administered. Shortly after being discharged from the hospital, the man cut himself badly in a fall. Had he been on that blood thinner, that fall might have resulted in much more serious injuries.
Digital data allows us to take an active role in our health?not just by delivering us the right information, but by allowing us to see where our lifestyle choices influence our health. For example, by tracking the number of steps I take in a day, my sleep and other measures of activity, I can see how going to bed thirty minutes later than normal impacts my activity level on the following day.
And data will fundamentally change doctor-patient relationship, too. Today’s doctor assessment largely relies on the same approach that has been used for hundreds of years ? the doctor asks the patient questions in an attempt to pinpoint the problem by intersecting the answers with her or his own knowledge and experience.
Of course, this type of discovery is fraught with imperfections ? our brains are analog and we forget the particulars of our health history. But good digital data never lies. As more of our health data is captured, stored and shared, doctors will become more efficient, our health care system will get better and we will be healthier.
In the ER down the street, with me sitting on a sterilized bed in a sterilized room on an otherwise quiet Saturday night, a doctor, a nurse and a patient could have changed analog behavior ? if only we had had access to digitized information.
Shawn DuBravac is chief economist of the Consumer Electronics Association and the author of “Digital Destiny: How the New Age of Data Will Transform the Way We Live, Work, and Communicate.” Follow him on Twitter @shawndubravac.
Filed Under: data, electronic health records, health
Comments on “Digital Health Data vs. An Analog Memory”
Really? You think the ER is sterilized? That’s funny. You’re funny.
Put Medical Records in the Hands of Patients - Literally
It has long seemed to me that the right way to go is to put full control of medical records in the hands of the patient. Either physically on their phone or encrypted in the cloud with the decryption keys on their phone. Use DRM to give temporary, revocable access to others for specific treatments. Use digital signatures to make sure that the records under patient control are the official records and have not been altered.
One of the downsides of this idea is that massive data-mining becomes significantly more difficult — but not impossible. If you want to mine a patient’s data you just need to get their permission on a case-by-case basis, which can be automated. Ultimately, that’s a good thing. Let the patient decide if they want their data used, they are the one who has the most to lose, it should be their choice not an anonymous bureaucrat on the other side of the continent.
Another downside is that in emergency situations, getting access to the health records might be harder – if the patient is unconscious they can’t authorize access. But (1) that’s an impossible standard that we don’t meet today as this story illustrated and (b) it can be mitigated by letting a patient designate family members as alternatives in the case where the patient is incapacitated. Being networked means the family members don’t even need to be present, they can give consent via their phones from wherever they are.
Re: Put Medical Records in the Hands of Patients - Literally
I believe you misspelled “upsides” as “downsides” in that sentence.
Re: Re: Put Medical Records in the Hands of Patients - Literally
No. There is tons of value to data-mining health records. Big Data isn’t just for exploiting your privacy to take advantage of you. The fact that Big Data can be used for all kinds of good – both social and invidual – is the reason that as a society haven’t just killed it outright with legislation. What we need are ways to minimize the harmful uses while still maximizing the good uses.
Re: Re: Re: Put Medical Records in the Hands of Patients - Literally
There is noone who can be trusted with big data. It will always be used for bad, no matter what you are told. Yea, some will have good intentions, but those actually in control of the data will not.
Re: Re: Re:2 Put Medical Records in the Hands of Patients - Literally
Which is exactly why I am saying that each patient should have control over their own data. Including the ability to opt in to data-mining on a case-by-case basis.
Re: Re: Re:3 Put Medical Records in the Hands of Patients - Literally
Sounds like a bad idea. You’re making a colossal assumption that everyone is tech-savvy. They’re not. I doubt if one in ten is. The other nine watch tv, eat fast-food, follow the Kardashians… They might have smart phones, but that doesn’t mean they know about data, opting into data mining and whatnot.
Think about how many people, and who, reacted to Edwards Snowdens revelations. That should tell you something.
Re: Re: Re:4 Put Medical Records in the Hands of Patients - Literally
Tech savvy has nothing to do with it. It’s having a direct personal interest that matters. Comparisons to Snowden are poor because there are essentially no practical alternatives – normal people do not have spy-free options. This is a spy-free option by default.
If you take your thinking to the logical conclusion it means that we can have none of the benefits of electronic records because people are too stupid to look out for themselves. Any arguments based on the premise that the population is too stupid to make decisions leads directly to putting control of those decisions in the hands of bureaucrats. Which, as you have just said upthread, can not be trusted. If you want to stamp your foot and declare that nobody ever should use electronic health records then you have consigned your self to irrelevancy because we are already decades past that point.
Re: Re: Re:5 Put Medical Records in the Hands of Patients - Literally
Let’s call it data-savvy then.
I thought you were suggesting that each patient should be in charge of their own data. I’m suggesting that this wouldn’t work because people in general don’t understand data, validated by my Snowden comment. People have known or suspected for a long time what was held about them in large government and corporate data silos. I don’t think though that they know what this means, when data points can become aggregated, and bad actors have access to those collections.
Also, above was my first comment on this thread, the comment about big data and trust was someone else, but it is a point I tend to agree with.
Two major challenges to solving this issue.
HIPAA is great for a privacy standpoint, but it also makes sharing medical information very difficult. Because Hospitals, doctors, other caregivers have to follow all the necessary precautions to get consent for access to medical records of a patient that may be stored in another Hospital or health care system. This isn’t insurmountable, but it is a challenge that can be hard to automate.
2) Different EMR systems.
There are at least half a dozon different “major” EMRs, as well as plenty of smaller solutions. Each one stores and manipulates data differently. So, it’s really hard to pass data between them. So they made a standard for communication of records. well one kind. Then another for a different kind. and another. and another. And each one adds more complexity to deal with in the underlying EMR. Sure, by standards their interoperable. but the Requesting, authorization, and actual transfer is a largely manual process. Mainly because the systems can send and request data, but human intervention to select/fulfill the requests. (It’s really hard to query and access a third party system AND follow all of the HIPAA compliance checks)
So the idea that all this information is somewhere in different walled-off silos is pretty accurate. But this is the way it essentially has to be in order to be compliant with patient privacy. The tech for sharing records is fairly readily available, contrary to what many might claim. The real bottle neck is the law and keeping in compliance. Not intentionally, just the result of laws that were constructed around paper records being faxed, without consideration for the advent of information being able to be sent in a more automated fashion. Meaning, most of the authorizations have to happen manually.
Specifically: Every time you want records outside the given organization, the patient has to sign the request for release and more or less specify what can be released. This stipulation alone precludes most of the automatic procurement of records and building of a complete medical history.
The challenge of a global record is not in the technology, but in a dated regulatory framework that has failed to keep up with modern advances.
But… that’s pretty much par for the course.
…put in in “the cloud”. Then if you ever annoy me, I can hack your data and get all that nonsense about your severe drug allergies deleted. Not to mention the drugs you’ll be on for that troublesome AIDS, hepatitis, etc.
I recall right around 80-83 or so when NY driver’s licenses were going to be mag-striped. The propaganda for it was that they could store all your medical information on them. Didn’t go over well…
What’s the downside to an extra tetanus shot? Death? Paralysis?
How about some kind of National Health Service?
That’s free for all?? What a thought. Or is that just too socialist for good ol USA.
Re: How about some kind of National Health Service?
Medicaid for all would do it, according to a libertarian friend of mine. Private healthcare services could run alongside it, competing on service.
People need to stop jumping at dog whistles and look at what actually works in practice.
As for digitising our data, data-mining is a concern. Our Glorious Leaders (Conservative government!) are merrily selling our medical data whether patients have opted out of it or not. Putting it into the hands of the patients does seem to be reasonable, though I daresay there’s a beneficial tradeoff for making some of that information available. The questions are what, to whom, how much, and what are the benefits thereof?
Medical Records... yah, I got them.
First, your “extraordinary case” is a Red Herring. This, therefore that. Coincidence is very convincing and that’s why there’s 70 million Catholics in the States alone.
Secondly, I have a copy of my records. A hard copy that I take with me if I have to stay anywhere for an extended period of time. Last update – six months ago. It’s cheap, readily available, and humbling to see I’m about one and a half inches of paper – twenty years worth of visits…
Nevertheless, it’s there, if I need it. Digitization is taking a long time because of fears of data breaches etc., but this is, imo, almost always (99%) caused through negligent human actions. Let’s face it, I do not want any of my medical history as accessible as AshleyMadison, but I also understand that Togo might not be on the same digital page as my country.
It’ll take some time, but I’m sure we’ll get there. For now, paper is the way I go…
Given how useless record keeping seems to be in the UK medical system (we spent billions on anew computer system only for it not to work) I’d rather rely on my own knowledge than some typo or mis-entered piece of data which ends up with me having the wrong/unnecessary treatment.
Electronic Medical Records
Please go ahead and digitize all your Health Records. Not us at the NSA, or anyone else will try to download, publish or read all your medical records. So you may as well put them in plain-text, in a single database please.