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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  12. When you are claiming injuries in a car accident, slip and fall or some other type of accident, you need to prove your personal injury claim. How do you prove that you were injured? Medical records. How do you prove your treatment? Medical records. If you have been in an auto accident and are claiming a back injury or “whiplash,” then the medical records will prove your claim.

  13. Many people have reservations about maintaining their personal health information in an online database, whether government run or privately managed.
    Those with young children and/or elderly parents often look for a low-cost, simple solution for keeping family medical records up to date. They want to carry records on a flash drive and/or print them for a binder to keep in their car for emergencies and doctor visits. They need something that’s quick and easy and doesn’t require complicated software.
    Our PHR product is available as simple Word files or PDFs that you can print for a binder. We think it’s the best, low-cost solution on the market. Please visit and judge for yourself.
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  14. I think, personal medical records should be kept by goverment in a professional manner. Maybe an instution may be founded for this purpose. Also possible future diseases may be guessed by such a health care institution.

  15. I am new to this blog, but home my comments will give some weight to the idea that PHRs are really bypassing those who really need them most – the seniors. I have recently started a company called HealthNotebook Consulting that helps people (individually and in seminars) gather and organize their health information into personal health records. I am an ER physician and see the problems daily of lack of knowledge about one’s own health. Bad medical care, medical mistakes and lack of patient advocacy top the list. Everyone should take some responsibility for their own health but the elderly (and I have spoken to thousands) seem overwhelmed by the “on-line” phenomenon.
    Discussions about how to use on-line records are generally so far above the heads of seniors who are already struggling to figure out how to organize their polypharmaceutical drug lists.
    What I tell my patients and clients is SIMPLE SIMPLE SIMPLE – keep your own records and bring them to the doctor. You are the caretaker of your own health in the end.

  16. The best way to deploy electronic medical records in a cost and effective manner is to have a central records center operated by an independent agency, and under strict government oversight. Such body should be able to implement an open source database accessible through the Internet in a secure manner, the same way as we access our bank accounts or e-mail.
    The standardized health record form could then be easily created and updated by patients and authorized healthcare providers, using both the patient’s personal ID key (i.e. RSA key) and the provider’s ID key. That way both the patient and the authorized providers can access the record during every visit, update it and keep track of it as needed, in a reliable and very secure manner. There is no need to buy expensive software or hardware.
    Most doctors and healthcare providers already have Internet connection and computers with web browsers capable of encryption and secure authentication. It would save tens of billions of dollars of the stimulus bill that should be better allocated to improve quality and coverage of healthcare where it is most needed. Those institutions that for any reason purchased expensive applications would also save many millions in current and future costs of technical support and license upgrades.
    Open source is the most universal and scalable platform to support the current and future developments and needs of electronic medical records worldwide and the myriad applications that can be used for health prevention and management, as well as for research and policy making.

  17. I totally agree with Giau Le, one is kissing his private health life goodbye with this provision – and this does not mean that the medical field would be perfect at all nor does not mean that all diseases would be cured – nor diminishes the chances for malpractice. If it does help in determining costs, effectiveness and cure to diseases or illnesses, real people cannot be guinea pigs with process such as this.

    I just posted a blog above this one a couple of days ago. After posting it I realized I did not provide much compelling data to make my argument as strong as it should have been so here they are!
    1. The basis for Obama’s $20 billion stimulus bill to convert MRO’s is a theoretical study published in 2005 by the RAND company which is currently funded by Hewlett-Packard and Xerox that stand to benefit financially from the marketed electronic medical tracking devices.
    2. Harvard’s teaching hospital has used MRO’s to maintain patient’s files for years and there have been no reports of any significant improvement in driving down medical mistakes or malpractice.
    3. Kiss your private health life good bye!
    The provisions in the stimulus bill will allow the government to monitor treatments to make sure your doctor is doing what the National Coordinator of Health information Technology deems necessary and cost efficient. I don’t know about you but if a loved one is sick and needs surgery and he/she is deemed not cost effective to carry on with the procedure,It would be safe to trust that as an American, my freedom and privacy has been unwillingly snatched from me.
    5. The Stimulus bill allocates more funding to the National Coordinator of Health Technology than the Navy, Marines, and Air Force COMBINED!
    These are only but the few reasons why MRO’s should not be implemented into our health system as a solution to the current ridiculously unstable medical system. In such a disastrous economy billions cannot be spent in such a frivolous manner and to such an unpredictable cause. It is apparent that Obama has made America a guinea pig by testing out the success MRO’s will have on the health care system

  19. Medical records were created to hold and record specific health information in order for doctors to render better care to the patients. If Medical records were to be put completely online not only will there be billions spent on the whole transformation but the positive outcomes expected to take place are mere projections made by the software companies that create and benefit from hospitals and clinics purchasing the tracking device. Most supporters of MRO’s fail to mention the vulnerable position they put their personal health information in. The overall conversion does not just apply to online access to medical data but the ability for the government to track and control the health system. Governmental programs will be able to determine what treatment is appropriate in cost therefore having a strong voice in YOUR health. Overall medical information does not belong online but kept away and only accessible by health administrative professionals.

  20. As President of RSRS, one of Canada’s leading medical record management companies, I have seen firsthand what happens when patients don’t become proactive in a country where our healthcare system has been seriously compromised…
    – 1 out of 10 people in my Province of Ontario do not have a family doctor.
    – Only 13% of doctors are taking new patients
    – 30 per cent of Canadian patients received wrong medication, improper treatment or incorrect or delayed test results.
    – We are amongst the worlds largest users of walk-in clinics and emergency rooms of any country in the world.
    – Who else but the patient has access to ALL medications, naturopathic, homeopathic information about themselves?
    If a patient doesn’t collect a 360 degree snapshot of themselves… who will?
    R. Elan Eisen
    RSRS – Record Storage & Retrieval Services Inc.
    Toronto, Ontario, CANADA

  21. Some may consider me a Luddite, but I believe it is in the individual’s best interest to maintain paper files, not online PHRs. My experience includes being a personal care manager/caregiver for persons with AIDS during the years 1982-1995, i.e. before the miracle drugs were available. I kept patient’s medication list online so it could be updated whenever dosages or new medications changed. I would keep a printed copy in the person’s medical record file. I also kept online using Excel the results of all blood tests by date of service-inpatient or outpatient. With a printed copy of the most recent record of tests and a list of physicians requesting the lab tests, i could go to any ER or to any office visit with new or routine physicians and they or their office staff could make their own copies for their files. Carrying around a laptop or even a flash drive injects the possibility of errors from transferring incompatible file formats or allowing the physician to see incomplete data.
    Every admissions clerk asks individuals to fill our a form for which there are inadequate spaces for additional, historical information. The phrase “See attached” is very efficient.
    When I was an attorney-in-fact for health care, I created another Excel spreadsheet to reconcile dates of service and individual services as recorded. This reconciliation record was very, very helpful for physician billing errors or for Medicare’s denial of valid claims. Using a separate calendar into which I recorded dates of services as they happened, I found several double billings that the Medicare or the PPO had missed and paid. Of all the relevant data, I found that the Date of Service (DOS) was the most important to record, along with the provider and location of service. Pocket size calendars are very inexpensive and easily maintained for each individual.
    On the other hand, I applaud the automated data maintained by the Veterans Health Services. Any enrollee can obtain specific or total patient care records, including psychiatric notes, all tests performed and physician notes from office visits. There are connectivity issues between regional systems, but overall it contributes greatly to physician decision making and the overall efficiency of the healthcare provided by the VA.
    The VA has an online personal health recording program accessible only to the individual found at http://www.myhealth.va.gov/. There is no link to or from the VHS system, but for those enrollees wanting to created an annotated personal record of one’s health status, it is quite user friendly. An additional benefit for every physician seen is that all medications in use or were in use, plus any allergies, is immediately available to the pharmacist and the physician. It’s a great system, in my opinion, for any HMO.
    I have not encountered errors in the electronic data maintained by the physicians and labs I use today. Thanks to HIPAA, it is unusual to encounter hard copies of my patient records, with the only exception being imaging films. I find that the imaging labs are more than happy to give me my original films–so they do not have to retain them.
    I am wary of software for sale to individuals, especially if the data is not stored on the individual’s computer. I have maintained my own record and several for others using existing software and hard copy. There is almost zero marginal cost for me and I have a reliable record at all times to carry to appointments in a folder with a copy for giving the record to the provider.
    It is not rocket science to use my method. Any data maintained in .pdf or .jpg format in my computer files is backed up, too.

  22. The list as seen on Google Health was inaccurate a. because patient Dave says it’s inaccurate (and believe me, he knows) and b. because it’s downright misleading when it jumbles together all the categories(i.e. ruled out, inactive, etc.)you mentioned above. I did not mean to say the hospital electronic record was inaccurate, but that what “comes out” to another source was inaccurate.

  23. bev M.D. Why should we assume that this list of diagnosis is inaccurate? I am sure that the comprehensive medical record at the hospital properly makes note of which diagnoses were ruled out, which are no longer active, when each diagnosis was made, by whom and what procedures were ordered for it and whether the results confirmed it or not. Any physician perusing the electronic record in the hospital would have understood exactly what he/she is looking at.
    The problem here is that the diagnoses list was taken out of context and exported in a rather primitive fashion to another application. e-patient Dave would have probably been better served by a complete printout of his hospital chart.
    I totally agree with you that requiring patients to maintain their medical records is preposterous and this is just one example why. We are witnessing a perfect storm in a teacup…. and there will be more to come.

  24. I hate to say this, but the patient empowerment movement, while important, will only ever affect a small percentage of total patients – those who are more highly educated and affluent. Many patients can barely keep track of the simplest data, nor follow simple instructions, nor take their drugs in the proper manner. Although putting the responsibility for maintaining records on a patient is great for those who CHOOSE this method, another system is needed for those who won’t/can’t. This is why the data coming out of the hospital/dr’s office systems needs to be accurate.
    Despite Margalit’s insistence that none of the possibilities for e-patient Dave’s medical record inaccuracies “have anything to do with technology”, the fact remains that they are inaccurate. Period. We have to fix that, not fix blame for why.

  25. Gilles: I’m glad YOU said:
    “If ACOR can do so much good with a simple (but highly flexible) distribution system of emails, I can just imagine what we will all be able to achieve when we can rely on complex applications using CCRs carrying data with verified integrity. It is just too bad it seems we won’t achieve it tomorrow morning.”
    We’re just scratching the surface of this vision now. Complex, sophisticated computer applications, working upon accurate, verified, and up-to-date personal health information in CCR xml format, both for individuals and for populations of patients/consumers. What a knowledge gold mine that could be!
    Imagine, for example, that any one of the patient groups with conditions in PatientsLikeMe were able to submit their CCRs (stripped of identifying data) under these conditions, over time. Imagine the same for any population of cancer patients on any particular drug or treatment regimen, again, assuming the conditions above.
    Let’s continue to discuss. DCK

  26. “I have seen the complexity of building electronic medical records the right way – in a way that accurately connects all entities, provides good security
    and works seamlessly, etc. as a volunteer for CareSpark ( a major interstate EMR effort) and the NHIN Customer Perspective Team for the national EMR system.
    I highly recommend people stick with the systems the government & health institutions are creating. I doubt few others will be able to build a robust enough system that will work right & be as secure as needed. Medical
    identity theft is on the rise and people are leaving themselves open to many problems by rushing into the online efforts.
    BUT, As much as we need these systems, the whole system will never work the way it is supposed to for individual patients until patients learn HOW TO BE PATIENTS. So much of what the government, professionals, employers, etc are doing is a substitute for what patients should be doing for themselves – they need to take responsibility & learn how to collect detailed info about
    themselves -beyond that in the EMRs- have fingertips access to it at all times, know how to use that info to help their health care providers think,
    connect the pieces of their story, help DECREASE costs and so much more.
    Example: the average hospital error costs ~$8500 in direct costs alone. A large % are preventable and savvy patients can prevent them. If just one
    thousand patients prevented one error per week, $8.5 million would be cut from the system and thousands more in indirect costs would be saved. I have
    survived 3 medical errors & know what is involved.
    If, once EMRs are up and running, patients think they can hand over even more control of their care to their docs than they already do, things will improve but not to the extent they could or need to.”

  27. David,
    Good question. I suspect Google and the hospital have all kinds of disclaimers but they may not protect them. We need a malpractice attorney to answer your question.

  28. If the data are incorrect, and forwarded to Google Health, after which one of Dave’s new doctors somewhere uses the erroneous information and harm results to Dave….is there a cause of action against the hospital? Against Google?

  29. Let’s just clarify a couple of things:
    ICD-9 codes are for describing conditions or diseases
    CPT codes are for describing procedures or what was done by the provider for the recorded ICD-9s.
    There are no other “billing codes”. Claims contain ICD-9s and the CPTs linked to those ICD-9s.
    The list of conditions that e-Patient Dave pulled into his PHR are conditions that the hospital billed for.
    If the list is incorrect, there could be five reasons for that:
    1) the hospital is fraudulently billing, which is very unlikely in this case
    2) the billers at this hospital are incompetent, again probably not the case
    3) e-Patient Dave was incorrectly diagnosed multiple times
    4) e-Patient Dave either suffered from these afflictions at some point, or the physician suspected he did and ran tests to find out
    5) the hospital electronic record system has bugs
    In all the above cases these diagnoses=ICD-9s would correctly appear on the list, and with the exception of #5, none have anything to do with technology. The big problem here is the fact that the diagnosis date is missing. A note regarding resolution and perhaps an active/inactive indicator would have helped too.

  30. To me the solution is to give the different parties involved in medical records their own part of the medical record where only they can write or edit their part of the medical record.
    The first layer/section would be only writable/editable by certified medical professionals (doctors, nurses, etc). A doctor is only going to trust the record that another doctor or nurse recorded. The next layer could be the patients personal and editable medical record. This allows the patient control of information that medical professionals can decide to trust or not trust. And lastly the third layer would be the insurance and billing section of the record that would editable only by the different insurance and billing companies that a patient uses. The different parties are only going to trust what they have had control in editing. This is not to remove control from the patient, but to give greater strength to the information so it becomes usable. The patient should of course always be able to spot errors in the record and request for them to be rectified, but that the other parties should have the final say in changing their portion of a patients record. Otherwise to me there is no point in keeping records at all if the different parties never use them.

  31. A unified EMR with accurate patient info requires extensive standarization works. Without that being
    done we’d have problem.

  32. Wow, thank goodness for Google Alerts for alerting me to this buzz here. I’m glad this story has generated so much attention for PHRs and the whole idea of being responsible for one’s medical records.
    Folks, as my original blog post 4/1 said, I work with data in my day job (call it tech-savvy if you want), and I know first-hand that you can’t design a data solution (data model and surrounding processes) until you’ve thought out what you want to do with the data. Some people call this “use cases” – “What are the cases where someone’s going to use this thing?”
    Danny Sands (my primary physician, and co-chair of the new Society for Participatory Medicine) was good enough to support this project today by plowing through ALL the records that exist for me in PatientSite. He found some truly crazy stuff, like the ICD9 code for hidradenitis being entered during the abdominal ultrasound that spotted the cancer in my kidney.
    And, as all you docs and experience e-patients know, that was one out of thousands of line items including billing codes and procedures and more.
    A really good question is, do you WANT all that dumped out?
    The only useful way to answer that is to ask what you plan to do with the resulting data – the use cases.
    Lots more later on this.

  33. Rick,
    What happens if you have accounts in two or three banks and one or more brokerage accounts, etc.? The ONLY way you can get a complete picture of your financial position is to access each individual institution or pull them together using an accounting system such as Quicken. So how is the banking model of “silos” better than what we have in healthcare?
    I don’t understand your point about third party intermediaries who move money around and/or the Fed. None of them aggregate your financial records in one place, so how would this model fit healthcare? Care providers need a patient’s complete health record when and where they treat their patient — and following the financial model won’t accomplish that.
    Re: the McKinsey study, I can’t comment. I haven’t read it. However, I share your opinion that the healthcare industry can learn something about efficiency from the business community.
    Finally, I must comment about trying to model healthcare IT after the financial world. In my opinion, they aren’t at all analogous. The needs aren’t the same, the mechanics aren’t the same and the risks aren’t the same. I have commented elsewhere on this same point but will do so again since this analogy is cited over and over again — and, in my opinion, is terribly misleading. Online or ATM banking transactions trigger receipts or acknowledgments for each transaction so I have a record of each transaction and can ensure they are accurate. Similarly, each month I get a statement for each account I have so I can reconcile each account. But unless I use a program like Quicken each bank and/or brokerage account remains a “silo.” Thus, despite the mechanics being perhaps slicker in the financial world, we still have disconnected “silos” everywhere. Is that the model you want for healthcare? I don’t.
    Moreover, the risks inherent in healthcare IT are dramatically different from the risks in banking IT. In banking, the worst that can happen is my account(s) may be breached and money stolen — but it is insured so how terrible is that? The same holds true for credit card theft and fraud. However, in the case of my health records, if they are breached, lost or stolen, I chance losing my insurance, my job, and even a shot at proper care (they may no longer be available to my physicians)! Is it any wonder consumers will use online banking while vigorously protesting having their records accessible over the Internet?
    One additional comment that may be heresy to some. RECORDS ON WEB SERVERS ARE NOT SECURE! So I wish advocates of making health records available over the Internet would stop saying they are! If we keep deluding ourselves on this and other points, we’ll never meet the needs of patients and care providers!
    If you want what I consider a far better role model for healthcare IT, I recommend looking at the iPod. It is a complete system that meets the needs of the consumer (more than 170 million have been sold!). It contains all the music, videos and clips the consumer wants. Its contents are complete songs and can be easily accessed and managed. The consumer has it when and where he/she wants to listen to music — without having to access the Internet to do so! It is even self financing; no one has to subsidize its adoption or use! The only real difference between this model and healthcare is that the iPod has one principal source of input, iTunes, while a healthcare patient probably has multiple input sources, i.e., lots of docs, hospitals, etc. But I believe multiple healthcare input sources can be accommodated!

  34. Thank you Dr. Kibbe for writing “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.”
    That is SO true. All these passionate exchanges are taking place because we are convinced that informed and engaged patients produce a radical change in the care they receive and in the way future patients will be treated. If ACOR can do so much good with a simple (but highly flexible) distribution system of emails, I can just imagine what we will all be able to achieve when we can rely on complex applications using CCRs carrying data with verified integrity. It is just too bad it seems we won’t achieve it tomorrow morning.
    But, just as the empowered patients forced their way into the static world of oncology, neurology and mental health 15 years ago, so will today’s generation of e-patients push for a much more participative implementation of EHR from now on.
    We have demonstrated that we can build very complex systems and work in tandem with the best experts to create advanced centralized tissue banks for rare disorders, raise the funds to chose research priorities and build software platforms that completely transform the statistics for significant number of patients. We can certainly help you, the experts, in building a better, more democratic, more responsive and more accurate system for Electronic Health Records!

  35. Rick–
    thanks for your comments–you bring up an key point about health disparities–I actually think techonology can be of great benefit to help correct health disparities–while many people with lower incomes don’t have computer access, they do have mobile phone access and as mobile computing grows because of smart phones on faster networks, we are bound to see opportunities to reach patients with mobile apps, tweets, and sms. think of being able to remind a patient to get their labs with a text message,or receive blood sugars over twitter

  36. Sorry folks,
    misread the headings–first response to anordine, second to Merle.
    Ashley–here here to your comments, and thank you very much for reading–part of the problem is that doctorspeak is very different from regular speak. Second, there’s the issue of health literacy in our population in general.

  37. Ashley,
    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.

  38. 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.

  39. Merle–
    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.

  40. 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…….

  41. 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.

  42. 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.

  43. 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.

  44. 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?

  45. 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.

  46. 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.

  47. 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

  48. 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.

  49. 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.

  50. 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, healthrecordcorp.com and medkaz.com.
    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.