Should You Keep Your Own Medical Records?

Should You Keep Your Own Medical Records?


Over the past 18 months, technology companies are jumping into one the biggest untapped frontiers in IMG_1534-leveled the economy:  Health care.

Among the groups taking the leap are Microsoft and Google.  Both have launched products called Personal Health Records over the past 18 months.

Both Microsoft Health Vault and Google Health, as they’re called, allow patients to store their own personal health histories online.  Like all of their other apps, they are both free to consumers.

Here’s how they work:

1) You create an account (or sign in if you already have an msn or google account)

2) you enter and/or modify you health history and even upload data from devices like blood sugar meters.

3) You can pull records in from medical centers, doctors’ groups  or insurers that have agreements with the PHR company.

In general, PHRs have received a lot of good press since they were launched.  But a recent story form the Boston Globe has to make you wonder if they’re the right solution.

The story describes a gentlemen named Dave deBronkart (known to many of us who follow health IT as “e-patient Dave,”
a very tech-savvy guy with an interest in online health.  Mr. deBronkart decided to transfer his medical records from a Boston hospital to Google Health.  When he did, he was shocked to learn he was one very sick man.

According to his hospital records, he had metastatic cancer (he is kidney cancer suvivor), chronic lung disease and an aortic aneurysm.

Funny thing, though.  He felt absolutely healthy.

It turns out the problem is that a good deal of the data had come from billing records and not directly from his medical records.  If you know anything about how doctors bill, we use all kinds of codes and associations for those codes that can easily be misinterpreted by your insurer. When that happens, your medical history can get jumbled with a lot of misdiagnoses.

Hence, Mr. deBronkart is not as sick as Google Health told him he is. But it’s a good case study in health care–consider these scenarios:

  • You’re a patient with a history of a bleeding ulcer that’s now gone, and you end up in the ER with chest pain.  You should get aspirin to unclot your arteries, but if your PHR tells doctors that you have a “GI bleed” you may not due to the risk of worsening bleeding.
  • A friend of yours  who uses a PHR is injured in an accident and hasn’t updated his records in over a year (even though he’s seen his doctor in that time).  How accurate is that data?

In the Globe article, the answer from a representative at Health Vault is that one needs to be very proactive about keeping things up to date and resolving any confusion.

But that’s like saying if you have a bank account, you, and not your bank, are responsible for calculating your balance, scanning images of your checks and calculating the interest in that 6 month CD.

And that’s the problem with PHRs.

Instead, a patients’ REAL record should accessible to him or her online, and those electronic medical records (as opposed to PHRs) across the country should just talk to one another like ATMs do.  Finally, docs like me need to keep your digital health history accurate and by updating your medications, allergies, and diagnoses regularly.

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60 Comments on "Should You Keep Your Own Medical Records?"

Apr 14, 2009

So, that’s a no right?

Apr 14, 2009

I share your criticism of the PHRs you describe but because they are sorely lacking does not mean the concept of a patient controlling his/her records is wrong. We just need a better solution.
I won’t bore readers of this site with my solution, you can read about it on our web sites, and
But I do want to take issue with your ATM/Banking analogy. It is often cited as being similar to health records, but it is not.
First, to my knowledge, ATMs do not talk to one another. They talk to the specific account at your bank identified with the card you use to activate the ATM (and if you have more than one account, you must have a card for each account). Second, there is no site or application in the banking system that aggregates your accounts in one place. Each bank is its own “silo” — sound familiar? If you want to determine your financial position, you must rely on your own application such as Quicken.

Apr 14, 2009

I agree with Merle’s comment. Of *course* patients should keep their own records. I need to be informed about my own health; more importantly, if any mistake is made, I’m the one that suffers! So it behooves me to reduce the chances of that happening by ensuring everyone involved in my healthcare has full and complete information.
Re: the banking analogy: I *am* responsible for calculating the rate of return on my CDs — how else will I know if the bank makes a mistake?
And I’m not sure how your 2 examples (the GI bleed and friend going to ER) are substantially changed by having a PHR involved. Don’t those same scenarios happen right now with paper records? If I took a neighbor in to the ER and she wasn’t able to speak for herself, if she’d never been to that hospital before, how would the situation be any different? The first scenario happens when information is inaccurate — no matter what media is involved.
I don’t dispute that there are very real and complex issues with PHRs. But I think that your examples don’t speak to them.
As someone with multiple chronic conditions and a software engineer, this is a deeply interesting topic to me. I think that the real complexities are how to deal with the different sources of info (billing info vs. a medical-issue info, as you point out), and different privacy and ownership and control concerns. (Patient privacy, clinics & hospitals, insurance companies, employers, the government, … the whole ball o’ wax.)
I need a system that allows me to keep the data that is important to me, update it *easily* and control the privacy and access ( = patient centric). My doctors need some of that info (and I need them to have it!) and they need it to integrate well with their info (billing, large registries and clinical trials…) and their systems ( = practice centric). And all of the parties involved need to have systems & processes so that they verify the accuracy and completeness of info that the other has.
The technology is the easy part; the ownership, privacy, security issues, and how they overlap and affect one another are that hard ones.

Apr 14, 2009

I just wish keeping track of one’s medical records were as easy as when you order cheap tramadol from the Internet. But it’s really really hard.

David C. Kibbe, MD MBA
Apr 15, 2009

Dear Rahul: Thanks for such a clear presentation of the problems e-patient Dave encountered. The solutions aren’t simple, but they must start with an acknowledgment that helping Dave, the patient, obtain summary health records that are accurate and up-to-date is a shared responsibility.
The hospital must recognize that more and more of its customers will want their medical records in electronic format, and help filter and organize these data, rather than just “dump” them to Dave’s chosen PHR, in this case Google Health.
Dave’s doctors need to help keep the data and information in terms that patients can understand, along with coded data, and be aware that reconciliation at discharge in CCR or CCD format will be valuable to them. And the PHR companies need to continue to help bridge the gaps that exist between health data in EHRs and IT systems that is largely incomprehensible, and organized sets of information available in patient-understood terminology on the Web.
Finally, as Dave is proving every day with his wonderfully insightful blogs, the patients/consumers have to take some responsibility for feedback and additional commentary until we all get this right.
The good news in all of this is that so many people actually care about e-patient Dave’s experience getting better. It’s lit up the blogosphere because it’s important. This isn’t about blame — it’s about improvement to the point that patients get accurate and up-to-date summary health information about themselves at every point in the health care system.
Regards, dCK

Apr 15, 2009

I agree that we all should keep a copy of our medical records. Although it is the responsibility of our doctors to keep our records properly, mistakes do happen. Especially nowadays that they use number codes to store patient’s information in their computers.
It’s a good thing that now, we can store our medical records online so we can access it anytime, especially when we are in the hospital and the doctor asked us about our previous health problems.

Apr 15, 2009

I’m pretty sure Merle is wrong about banking, and tragically so because his skepticism guides us away from a good model.
I have five different accounts at my little credit union, and can access any one of them with the only card I have — which also is a debit and credit card for purchase transactions. It works at any ATM in the world to provide me with near-real-time balance information. I say “near” because if I use the card to pump gas at a gas station, that transaction might not be deducted for a couple hours or so.
As to the “siloing” notion, this just isn’t the case. There are multiple third-party intermediaries for the transactions that move money from banks to retail merchants for purchases, including the various credit/debit networks, the Electronic Payments Association and in the background, the Federal Reserve system.
In June 2007, a McKinsey study pointed out that the $2 trillion a year in healthcare purchases lost 15 cents from every dollar in moving money from consumers to providers, whereas the $9 trillion a year in retail commerce lost just 2 cents on every dollar due to transaction costs. If the healthcare payment system could be made more like the retail payment system, we could save $300 billion a year, McKinsey analysts said.
They blamed the healthcare transaction inefficiency on a number of issues including, but not limited to, a high degree of paper-based record-keeping; too many manual and too few electronic transactions; a large volume of bad-debt expenses; numerous errors; and a large volume of non-routine transactions.
This all addresses Dr. Parikh’s point about the patient-centered PHR, versus the insurer/provider-centered EMR. Both need to be populated with accurate, identical information. A movement toward a more modern financial transaction model in healthcare would provide better assurance of this, and alleviate Dr. Parikh’s — and Merle’s — concerns.
Or to put it more bluntly, insurers and hospitals have a lot to learn from Wal-Mart and Visa.

Apr 15, 2009

Just think how much fun all this will be when ICD10 kicks in.
Recent personal experience has caused me to have mixed feelings about PHRs, either written and xeroxed or electronic. Having the information readily available didn’t help when the provider was unwilling to use the information because he/she was uncertain of its authenticity and accuracy because it was patient managed. We remained trapped in the ED as the physician played find the hospital’s medical records. The ones he/she trusted. I’d hate to think what would have happened if we had been at a different institution.
I’m also worried about the growing levels of medical illiteracy. How do the low income, non-English speaking, and patients lacking computer access benefit?

Apr 15, 2009

This is exactly why Zweena exsits. How is it that we categoricly dissregard our paper health records? Most of leave all the info work up to the health providers who treat us. We don’t value the information because we essentially have no skin in the game, ie. all we know is what the co-pay is. Someone recently shared with me that individuals spend more time figuring out what cell phone plan to buy vs. what health plan they should be using. Again, as individuals, most of us abdicate our natural consumer functions and become reactive patients. I count myself as one of these individuals and continualy hrough the years have to remind myself that being a healthcare consumer is very challenging.
So three years ago, I started to change this. At Zweena, we collect our clients paper records for them, organize them, and in our current product (availble today), give them a PDF of every page in the records we have collected. I would be more that happy to give anyone a guided tour of our back-end site. While not a fully developed PHR yet, what we do is all the work that most individuals are not willing or not able to do. So have a look and let me know if you want a tour. Send me an email. Zweena puts individuals first and believes that their current medical records (all be it paper) are worth collecting, scanning, and using in a more portable, accessible, and soon to be empowering way. Individuals will change this health system.

R Watkins
Apr 15, 2009

But this is a problem with ALL medical records in this country: they have all been fatally corrupted since we began using them as payment information rather than patient care information. This is an underlying problem with most EMRs that is not being addressed. Most systems, at some level, are designed to deal more with insurance company needs and documentation requirements rather than improve health care.

bev M.D.
Apr 15, 2009

The scary thing about Dave’s experience is that the CIO at his primary hospital, Beth Israel Deaconness, is John Halamka, M.D., well known to most of us. So if HIS hospital’s IT system is using billing codes (ICD-9) to transfer the info to GoogleHealth instead of the more accurate CPT codes, then there is little hope for hospitals with less sophisticated CIO’s. I would wonder if Dr. Halamka could comment on why the IT system uses ICD-9 codes and if CPT codes could be used instead.
No doc worth his salt is going to rely on this data to treat the patient, if it is so unreliable.

bev M.D.
Apr 15, 2009

Oh, and I forgot to mention another salient point in Dave’s post – none of the medical conditions cited in his GoogleHealth record had dates on them! So a low blood potassium level from 2 years ago was alarmed by Google as a dangerous conflict with the diuretic he is currently taking. This is just another ridiculous waste of time and effort, not to mention potentially the 20 billion dollars of health IT stimulus money…….


thanks for your comments–and for providing a more detailed version of the bank analogy–I agree after reading it that the analogy isn’t perfect, though for most of who aren’t familiar with banking and technology, I think it makes the point as best as it can.

inchoate but earnest
Apr 15, 2009

computers help us make mistakes faster, & as legendary UCLA hoops coach John Wooden used to say “the team that makes the most mistakes wins the most games”.
Connectivity -rather than content – is critical to better healt data for everyone, because content will include screwy stuff that needs unscrewing. The unscrewing usually happens when people can compare, contrast and correct.


thanks for reading the post and sharing your own experiences–it sounds like one of your key concerns is ownership of the information–great point. My only concern is that how does one who isn’t entirely familar with medical terminology and medicine itself properly document information so that docs can read it, esp if there’s an emergency?
You’re also right that medical records (written or elctronic) can be as messy as a phr. See Jerome Groopman’s oped in the WSJ earlier this month–the onus needs to be on doctors to keep that info clear. To keep us accountable, however, I would have the record and diagnoses available to the patient so that any discrepancies can be clarfied. At Kaiser-Permanente, where I work, we have something called My Chart for patients–that allows them access their meds, immunization records, and histories of their visits online. That’s a start, but I would say we could post even more detail online.