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Migraine and Electronic Medical Records- What you Need to Know

Keeping our Migraine and other health related records electronically is a part of the new health care law.  Patients often think this will simplify things for themselves, their doctors and staff.   However, the reality is that it often takes much more time to maintain them, and the practice can lead to unintended problems you need to know about.

I was surprised when I was offered the ability to view my electronic records online through one of my doctors.  We’re in the country, and often years behind large metropolitan areas.

Migraine and Electronic Medical RecordsYou should know up front that I readily admit I am a very reluctant electronic medical records (EMR) convert because I see too many ways for this personal information to be misused and abused.  Since this was being forced on me though, I figured I might as well get the ball rolling and make the best of what I considered to be a less than ideal situation.  However, even I was shocked when I started the process of setting up my account so that I could more easily manage my health records…

In my case, the process involved signing up for an account online.  I received a postcard in the mail with instructions.  After I started by creating my account, I was told to phone a special number to activate it.  When I made that phone call, they checked to be sure I really was who I claimed to be, then gave me a PIN that would allow me to access my newborn account.

So far, so good.

I had a few moments, so decided to complete the process before I lost the information and had to start all over again, so I logged in.

Up popped a page with the user agreement I was expected to sign before I could actually get access to my records.  Pretty standard protocol, right?

Not so fast!

I am one of those annoying people who actually reads the fine print on everything before I sign it, and this was no exception.  Buried in the lines of the user agreement was something that really angered me.

In order for me to have access to my own personal health records, I had to sign an agreement that said I was giving up ALL my HIPAA rights1!

If you aren’t familiar with HIPAA, these are the rules that govern how your private information is used.  Your health information is very private and you get to decide who gets your information and under what circumstances.  That’s the law.  Every time you go to a new doctor or hospital you are given a copy of your HIPAA rights and how that particular institution is going to use your information.  By signing that agreement, you are saying “This is okay to use my information as you have indicated in this release.”

Shoot, my husband can’t even talk to the nurse without me signing a form that gives them permission to talk to him, and only him.

There are many parts to HIPAA, but the part that applied to me at this time is all about who I was giving permission to view and use my health records, and what they were going to do with them.  In this case, if I wanted to have access to my records online, I was being required to give up ALL my HIPAA rights.  Yes, the word ALL was used, leaving no doubt as to what I was getting myself into.

Unfortunately, the sale of medical records has become a booming business.  EMR makes the sale of these records, legally and illegally, very easy.  When we were using paper records, breaches of security and information were commonplace enough, and thousands of patients in every state every year had their information lost or stolen, often without their knowledge simply because they didn’t know how to locate this information.  However, now with everything computerized, the numbers are in the hundreds of thousands of people affected by these breaches – the number of known/reported breaches in 2013 already is 17,292.  There are countless others that will not be reported because records have been breached in secret by staff and others with access to computers that contain the information.

The government requires medical institutions of all types to report only known breaches over 500 patients per incident.  Breaches under that number are not required to be reported, so the real number of information breaches is likely much higher than we can begin to imagine.  These reports are public record and can be found here at the US Department of Health and Human Services

Moreover, these records could in theory be used against patients by insurance companies, employers, anyone who wants access to someone’s health information, because once I give up my right to privacy, it is gone forever.  Just like everything else on the internet – once it’s there, you can’t take it back.  It’s never really gone.  It’s always “out there”.

The bottom line is: I don’t want my personal medical history floating about anywhere.  I would have happily signed a release for the company who was putting my information online as well as my doctor’s office, however I expect them to use extreme care with my information and ardently protect it from the prying eyes of people who have no business nor permission to view them.  I would also expect to hold them accountable if the information was not properly protected and was stolen or viewed inappropriately.  That’s only fair.

There was no way I was going to give literally everyone carte blanche to do with my records whatever they wanted whenever they wanted!  So, I refused to sign the agreement, and logged off the site forever.

I haven’t been back to my doctor’s yet to ask him if he knows what his patients are being required to do to get access to their records.  I presume he probably is unaware – he’s a nephrologist, not a computer operator.  Most patients who are internet savvy have seen so many user agreements that they often blindly sign them without ever looking them over, so I can’t help but assume that the vast majority of them are clueless that they have just signed all their rights away.

This is dangerous. 

There are several different companies online that offer this type of service, and many hospitals and doctor’s offices that offer this option too.  Maybe you are a patient that has utilized online EMR’s.  If so, did you read your user agreement fully?  Did you understand it?  Did your user agreement require that you sign over all rights to your records when you joined the site?

What do you think about EMR’s and the potential misuse of your personal and private information?  Do you mind the idea of signing over all your rights to your personal information?


This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.



  • tucker
    6 years ago

    That’s interesting that they would give you access to ALL of your records. My PCP belongs to a huge group (that includes specialists too- just happens that none of mine are in it) that allow you to see your labs, etc. As does my OB/Gyn, and my cardiologist just started a program that allows you to pay bills and ask questions and get refills. The pcp/gyn have similar features too. But neither allow you to see chart notes. Also as for the PCP, any outside labs, xrays, or special tests (MRI, EEG, etc) do not show up) even if you have them at an in-house facility.

    The other thing I have noticed is that I can review my meds, but I can not correct them and inevitably they have mistakes every single time even though I have brought a print out I created to every single appointment. Geez – You’d think they’d fix those! That would be nice to fix by ME so they’d have that correct at least!

    And it would be nice to see my chart notes so I could take them to various docs if needed. For now I just have to ask to have them faxed back and forth. But at the same time, I’m glad I don’t belong to an HMO and have the freedom of a PPO….

  • Ellen Schnakenberg author
    6 years ago

    tucker – you bring out some really important points:

    Yes, you can make changes to your record and they are required by law to let you do so.

    However, can you imagine if there are that many mistakes that you can see, how many are there you can’t see? This is why it’s so important to have access to your records.

    My mantra is:

    Patients – please ask for, get and keep paper copies of all your labs and imaging and records in a 3 ring binder so you can review them and get to know them yourself. This also makes it easier to carry them to another doctor because you don’t have to wait for faxes etc. It allows you to correct mistakes and to see when you have been overcharged or a lab has not been reported. Records are less important than labs and imaging, but it’s good practice to ask for them.

  • taralane
    6 years ago

    Ellen – I belong to an HMO that is fully computerized and I have access to all my medical records through their online site, which is as fully protected by passwords as a bank’s site. If one digit is out of place, I cannot get in to see my records. I find it extremely helpful, because if I want to share the information with another outside doc I see, I can print it out and give it to the other doctor. I sign the HIPPA forms with each specialist within the HMO for access to outside records. So far this is working pretty well for me.

    Your medical records are yours, and you have a right to get a copy of everything in your medical chart from your doctor. I don’t remember what part of the HIPPA law covers this, but I know it does. I have recently purchased a small scanner with which I am starting to convert the mountains of paperwork that I store for tax filings, pictures, and other things I can now convert into digital format so I don’t need to keep endless stacks of paper. Then as I don’t need them, I can delete them from my computer as they pass the 7 year IRS mark. This also is true for medical records. When I applied for disability I had to pay for copies of the many doctors I had seen over the 44+ years of my CMD. Most of these I had never seen before and it was very illuminating to see the Dr. reports. These are all going, via scanner, into my medical records file on my computer, stored by me. There are enough back-up drives that are not too expensive now, and getting cheaper every day, where you can input all your medical records on one back up device depending on how much storage you have on your computer.

    I don’t trust any outside source to keep good track of my medical records and share your concerns. I too read everything in fine print, which is why I have gone the scanner route to set up my own databank of files that is accessible. I will probably make it password protected as well. There are lots of scanners out there that will work with whatever system you have, and can read pictures, receipts, 8 1/2″ x 11″ paper or larger depending on what you have to store. As I get further into the scanning I’ll let you know how it goes, but I feel this is a good way to keep control over my own records and not have to rely on an outside service that may or may not have my best interests at heart.

  • CathyC
    6 years ago

    The health system all my Dr’s are part of is now on the EPIC system. This is fairly new in Oregon. I can view medical tests and such online, yet there are medical records that even to me are not visible. I don’t recall ever signing any HIPPA release when I made my account.

  • Ellen Schnakenberg author
    6 years ago

    CathyC – There are many different companies that offices can use. I only have personal experience with the one I discuss here, so it’s possible that yours is being done in-house and requires no signature OR it’s possible that you signed paperwork in the office that you may not have read that made an online agreement unnecessary. I suggest all patients check to be sure their health records are protected and always read everything fully before signing.

  • Val Frost and Bubbles
    6 years ago

    Having had CMD for well over 51 years, and still going, with the all-inclusive “variety pack”, I find that these chat forums are allowing me to help others with far less stress (which causes migraine) and BS than having to set up an account or pay cash or “pray” that the docs appreciate what we are really going through from day to day with it. Most treating physicians are “text-book-educated” in CMD – but they’ve never personally suffered through years of them. What meds work for one person do not work on another. Many companies make “blanket statements” about new and quick cure-all’s – but they only treat the symptoms, not the disease. Then 6 months later the news medical reporter tells you about all the side-effects. No thank you. I researched Chronic Migraine Disease on-line. I merged 4 reliable sources which were all-inclusive once merged. I now have a “one-stop-shopping” document for ease of reference, PLUS a 162-pound rescued black, beautiful, highly intelligent, female, NEWFOUNDLAND SERVICE DOG, named “Bubbles”, for her sparkling personality. She handles Migraine, Stroke, Disorientation, Vertigo, Seizures and Vision loss due to both Ocular Migraine Strokes and also limited vision due to Macular Degeneration. She is one multi-tasking (all by instinct and her sense of smell – no formal training needed at all), sociable and extremely 24/7 busy lady, and I never leave home without her by my side. Research CMD. Make your reference document for your own file. Take the meds that agree with YOUR individual system. “To Thine Own Self Be True” – ascertain what you need personally to be able to get through life despite CMD, and stick to your guns. You know what best works for you and no amount of “suggested” alternatives are going to help unless they come with 150% iron clad guarantees. There is no cure. But do not let CMD have YOU. Remember to stay strong! YOU have CMD, that’s the way to look at it, or any ailment, and don’t let it get you down. After close to 52 years, I know what I am talking about. I watched my own mother “give into it” all of the time, and it eventually caused her to use it as a “crutch” for sympathy and ultimately it evolved into a case of hypochondria. I refuse to quit. Bubbles and I get out each day to meet and greet folks face to face – share information – teach and learn at the same time. I am also on Facebook. You don’t need to be stressed out – trust me. God bless all of you and we both wish you a pain-free day. It’s “do-able”, you just have to keep thinking positive. Contacting someone who suffers from it, beats the hec out of the docs that haven’t ever had one and are trying to tell us what will work best. Let’s stick together. We suffer from it. We understand it. We will survive it. Val and Bubbz
    [personal information and language edited by moderators]

  • taralane
    6 years ago

    Val – Your rescue service dog sounds like a godsend. I live in a small 1 bedroom apt. which could not fit a Neufie, although I have known several and they are wonderful dogs. Where did you get your dog? I could sure use a service dog like this, and I would not be confined to the 20 lb and under size limit of my apt. complex if it was a registered service dog. I am at 44 years + with this disease, and want to live my life, not have it isolate me, which it has been for the last 10-12 years. I am so tired of not being able to do things because I have to cancel at the last minute.

    Thanks for any information you can give me.

  • Diana-Lee
    6 years ago

    My hospital/physician system uses a very good system of electronic records and have no such policy. So while you had a scary experience, I just wanted to share another experience. I LOVE the electronic records system because they can all share the same information through that same secure source, making it unnecessary for me to provide a brand new list of information every single time.

  • Ellen Schnakenberg author
    6 years ago

    isacooper – Please be aware that the type of sharing I’m talking about isn’t between doctors, but sharing my records online with me. EMR’s are designed for doctors to share and it can be really super handy for that, but doctors are still held to HIPAA laws.

  • Ellen Schnakenberg author
    6 years ago

    Diana, The type of sharing this was about was not within offices (which is why we now have EMR’s in the first place) but to allow me to view them online. Do you have access to your records online, or were you talking just about sharing EMR’s between offices?

  • lisacooper
    6 years ago

    My hospital/physician system also has very good electronic record-sharing within the system. Now I’m a bit nervous, though, because I don’t remember if I had to sign something to allow the record-sharing. I do always read the fine print, but if I was distracted at the time I could have missed something.

  • mrsbrimtown
    6 years ago

    Geez, this is scary!!!

    I don’t care for the EMR, and even considered not going back to the doctor – EVER. But my husband talked me back into it. For migraine management. Still wish I’d been firm and not gone. Is it true that if you pay in cash and don’t use insurance, your doctor doesn’t have to use EMR?

  • Ellen Schnakenberg author
    6 years ago

    mrsbrimtown – EMR’s can potentially be life saving. I do have another doc’s office that has utilized them within their clinic for several years, and boy is it handy to go to another doctor there and not have to bring all my forms and lists etc so he can get a history. It’s all right there! This can be really great. Honest. Where I have trouble is when these are shared with me online and I am asked to give up my HIPAA rights. To me, for me, that is dangerous and I won’t consciously allow it.

    When all else fails, simply refuse to sign documents until you feel up to reading and understanding them. Ask for help. And, if you don’t understand them, please talk to someone who does and be sure that you understand them before signing them. This information may not be presented to you separately, but may be a part of the clinic’s privacy policy which you will be asked to sign before your visit.

  • Ellen Schnakenberg author
    6 years ago

    lk26 – You’re talking about sharing records between doctors, which is actually a different thing. I’m talking about doctors sharing my records with me online. This usually requires a special service which you have to agree to use. Honestly, I’m not that familiar with all the options out there, but want only to warn patients to read everything before signing, and be sure to ask how their information will be shared and used.

  • lk26
    6 years ago

    I guess I have a little bit different perspective on CMR. I have been a nurse for 30yrs and more than half of those yrs were spent working in a MD’s office. We had electronic medical records before most people even knew of its existence. Taking into consideration since it was not being utilized by many others in the medical field. It was very convenient for my MD @ the patient’s bedside with his laptop and be able to pull up her/his office chart with recent med listings, labs, xrays, etc…. It gave him the convenience of seeing a “better” full picture and not having to repeat certain diagnostics or a trial of another med, knowing of a negative response in the past. All of this being said I can clearly see some of the disadvantages as well. I am reminded of a day, taking my Mom, who has a complicated medical history, to a new specialist with a large brief case of past testings & MD findings. All of which I had obtained in previous days, going from Md’s offices to diagnostic facilities & so on, collected the info that would be helpful to the new MD and to save us a trip back to the MD after his office had gathered all of the info that I had provided. As with anything new, all kinks must be worked out, changes made, etc… I can see that it could be an excellent tool available for all health care dividers. Only time can tell.

  • Diana-Lee
    6 years ago

    I highly doubt it.

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