How can I get access to my mother's medical records?
April 17, 2014 2:15 PM   Subscribe

My mother suffers from several serious medical conditions and sees a variety of specialists - some quarterly, some annually, and some only when she has a flare-up or episode. Several of these conditions, and/or the medications that treat them, impact her mental functioning. Every time she sees a doctor and I talk to her, I get the distinct impressions that she either hasn't given the doctor an accurate picture of what's going on with her, that she doesn't understand or remember what the doctor said, or both. I'd like to help her out by taking a look at her records and speaking with her doctors to make sure she's getting the treatment she needs and that it's being properly coordinated to account for her multiple conditions and multiple doctors.

My father, while generally helpful, is simply at the point that he's overwhelmed with the effort it takes to keep up with her - making sure she doesn't fall down, keeping her on the right schedule for her medications, etc. He's also somewhat of a know-it-all, so even at the doctor's office he won't ask detailed questions about her treatment because he thinks wikipedia and WebMD make him just as knowledgeable as the medical specialists who have dealt with these conditions for decades. So getting information out of him can be hit-or-miss as to whether it's coming from the doctor or from his own "expertise" - not to mention that he may or may not actually be giving the doctors complete and accurate information about my mother's symptoms. So the problem goes both ways there.

This is all complicated by the fact that I live several states away from my parents, so I can't simply attend all of these appointments with my parents. I understand if I was there in person with my mother, the doctor would have no problem answering my questions. But since I'm not... what to do?

I know I need some sort of release signed by my mother. Despite her reduced mental faculties, she's not so bad off (yet) that she needs someone else to fully make her decisions for her - but as her (only) child I feel that I'm in the best position to actually look at both the big picture and the details and help her advocate for the most effective treatments instead of just blindly following the doctors' advice. This isn't to say I think her doctors are doing anything wrong, or that I intend on second-guessing them every step of the way - just that I think medical treatment should be a two-way conversation between the provider and the patient but in this case the conversation seems more than a bit one-sided due to the issues I mentioned above.

Since my dad is still around and not incapacitated, I'm certain I wouldn't be her choice for a health care proxy, surrogate, or power of attorney - and I think those options are all overkill for my purposes anyway.
I assume there are more standard release forms that would just give permission for the doctors to speak with me and share her records, right? Is there one form I can find online and use, and provide copies to all of her doctors, or will each hospital and doctor's practice insist that I get her to sign their own in-house form? I found a lot online about HIPAA, but I'm not another medical provider or insurance provider, so I'm not even sure those regulations apply to me as a private third party family member. I'd prefer one form that I can ask her to sign once in person when I visit, then make copies and mail them to her doctors later. Tracking down and requesting separate forms from each office or hospital where she gets treated would be more burdensome so I'd like to avoid that if possible.

Once I've gotten her to sign a release and filed it with a provider, how do I get the information I want? I don't think a copy of her file would give me all the answers I want, though it might be a good start. Would they mail or scan me a copy, or can they insist that I appear in person to get it? I'd probably need to have one or more conversations with each doctor to get the full picture of her conditions and treatment plans - but unlike an appointment with my mother, they wouldn't get paid to have a 20 minute conversation with me. So how can I make this happen?

Any help you can provide will be appreciated - whether it's just the nuts and bolts of getting the proper release form, or the right way to get myself on a doctor's schedule to have the conversations. Thanks.
posted by trivia genius to Health & Fitness (15 answers total)
You need a HIPAA authorization, I believe. Those are often state dependent and sometimes facility dependent. You have to ask. On the form, write that you want to be able to have a conversation with her doctors regarding "x treatment" and a copy of the file. You will almost definitely get a hard copy and/or CD, that you will have to pay for by page.
posted by roomthreeseventeen at 2:25 PM on April 17, 2014 [1 favorite]

What you need is more than just an authorization form. You need her to grant you power of attorney (and sign an authorization) so that you can act for her in securing copies of her medical records. A person can have more than one agent (attorney in fact).

You would then want to hire someone who can read through the records and help you to understand what is going on. I would look for a recently-retired nurse or physician who might have time to do this work.
posted by megatherium at 2:41 PM on April 17, 2014 [2 favorites]

I found a lot online about HIPAA, but I'm not another medical provider or insurance provider, so I'm not even sure those regulations apply to me as a private third party family member.

In some sense, they do not apply to you per se but they still apply to the medical facilities with the records: They cannot give anyone the info without proper authorization, not even immediate relatives.

I used to request records as part of my job and had annual HIPAA training for five years. The simplest way to get this done is for your mother to ask her doctors to make her a copy of the records and have her pick them up when she goes. She does not need a release or authorization to see her own records and legally can do any damn thing she pleases with them. HIPAA is to protect her privacy from being invaded. If she wants to tell you all about her medical stuff, it's her life and she can do that. If she gets a copy and mails it to you, that is (legally) the simplest thing to do. (Yes, they probably will charge her for the copies and, in some cases, this can be spendy.)

But if you do find yourself mailing off requests: When I worked for an insurance company, we had a HIPAA compliant authorization form. Most providers in most states accepted it. Only a few providers wanted their own very special form. (Kaiser Permanente was a special snowflake, so if you are dealing with them, go to their website and find their own special snowflake form.) The company served all fifty states and a few other places. So while many providers have a printable authorization form on their website that you can print off and fill out (and have your mother sign and date), it is also possible that you could set up a general request letter, fill in the names and addresses of each provider, have mom sign all of them, and have it accepted. The request letter itself would need to be HIPAA compliant. HIPAA is a federal law and specifies what types of info are needed. Yes, different states can add requirements on top of that but I never saw any indication that they did. What forms are typically in use may vary by state but this would not necessarily impact what forms would be accepted from you. It was rare for me to get a letter back from a provider saying "Thanks for your request but please kindly fill out OUR form." Most of them accepted the company's standard authorization, no questions asked. (Of course, our auth had been reviewed by attorneys and was definitely HIPAA compliant, so that does not guarantee that some letter you created would be accepted.)

Your mother could also put an authorization on record with every provider making it okay for them to release records to you. This should also make it okay for them to talk to you about her medical information. How you would schedule that discussion, I don't know.
posted by Michele in California at 4:05 PM on April 17, 2014 [3 favorites]

I will add that if your mother sends a written request, it should not require an authorization form. They are her records. It only requires an authorization for you (or another third party) to request the records. So, again, whether in person or in writing, having her request copies of her own records is the simplest thing to do, legally speaking.
posted by Michele in California at 4:17 PM on April 17, 2014

Does your mother have a care manager, and if not, could she get one? If so, that might be the easiest way to accomplish your goal here. The care manager is a (medically trained) person who is capable of coordinating your mother's care between doctors, and coordinating your mother's appointments and medical needs with her.

It's a huge help -- we have someone in my family who is aging and has multiple physical challenges, and the care manager is key. In my family member's case, the care manager works for their primary care practitioner and coordinates medical care (not other services). I would definitely suggest seeing if this might be an option.

Also, even if the care manager couldn't talk to you about your mother's medical situation, you could talk to the care manager and make sure they're aware of outstanding issues.

I hope this isn't too far off-topic as a response! I'm imagining how my family would deal with this without having a care manager, and it's a scary thought. The care manager has really cut through a lot of these challenges you're facing, and has made coordinating care much, much easier.
posted by pie ninja at 4:20 PM on April 17, 2014 [2 favorites]

Seconding megathierium: you need to get a medical power of attorney (as distinct from a regular power of attorney). It'd probably mean more work for you, but then again it would help BOTH your parents: you could ensure your mother gets proper care plus take a load off your father's shoulders.
posted by easily confused at 4:58 PM on April 17, 2014

This post offers a great how-to for attorneys on obtaining client records in digital form. It should be easily adaptable to your situation using either a HIPPA release or a power of attorney. A Google search for "sample HIPPA release" will get you the form you need.
posted by ajr at 6:02 PM on April 17, 2014

Response by poster: This has been helpful so far - I think I have a good idea of how to get access to the records legally if I need to, but I will probably just ask mom to request them as Michele in California suggested since it doesn't require much in the way of additional paperwork, potential pushback, consultation with legal departments, etc.

ajr - thanks for that link. I think I can adapt that letter to use if any of mom's providers want to charge more than a few dollars for a burned CD - which I will encourage her to mail a blank CD with her records request to further eliminate marked-up fees.

Does anyone have suggestions for how I can actually get time with these doctors to talk? It's not just that I want to share information with them about her (although I do) - I want to learn about any considered alternative treatments and the reasoning for choosing the treatments they did. This information is totally absent from my parents' explanations, and I imagine most doctors aren't going to write "considered a, b, c treatments before settling on d and here's why" in the charts, right? They will just write down treatment d and its parameters?
posted by trivia genius at 6:14 PM on April 17, 2014

Once you get the authorizations signed and any copies of records, you can pretty much just call the doctors and leave a message and have them call you back. Tell them you want to get a fuller picture of your mother's health condition from the experts.
posted by radioamy at 6:57 PM on April 17, 2014

I imagine most doctors aren't going to write "considered a, b, c treatments before settling on d and here's why" in the charts, right? They will just write down treatment d and its parameters?

Actually, they very likely might. Some older or less charting-inclined physicians still write very laconic notes, but increasingly, those notes are unacceptable for billing purposes (i.e. a chart without supporting evidence for diagnosis X cannot be billed for diagnosis X) and for the purposes of defending oneself against lawsuits, and thus writing our your thought process or medical decisionmaking (MDM) has become of importance. Your chart needs to be able to stand in a court of law and needs to be able to explain to insurance overseers why you chose one path over another so you don't get hassled about doing it a different way.

Also remember that regardless of billing and liability, doctors don't just write charts for themselves to refer to. The charts should be able to be sent to another physician who can determine what the first doc did and why. Sometimes, yes, not every little decision will be discussed because to another physician the reasoning would be obvious, but given the degree of specialization and subspecialization in medicine these days, an oncologist certainly wouldn't expect an ENT surgeon to understand why they did what they did, for example.

I'd definitely recommend reading the charts and then calling the doctors you want to talk to. Even though they won't get reimbursed for it, most physicians are happy to spend a few minutes getting a better understanding of one of their complex patients' care (it sounds like you have information for them and not just the other way around!). Source: I'm a doctor.
posted by treehorn+bunny at 10:27 PM on April 17, 2014 [1 favorite]

A personal connection can do wonders, imo. My experience has been that being physically present for appointments has been a good way to be more included in that relationship of trust. Are you very far away? Could you take a few days to visit, for example, just for one or two appointments? If your mom feels that you're invested, and her doctor sees that's the case, you might be more likely to get a timely phone call, and perhaps more information from mom about decisions, her responses and well-being (even if factual information's incomplete or not 100% accurate). Developing good relationships with other staff helps too, in terms of being included in the flow of information. I haven't done this from a distance, but I think at least one face to face meeting could help you establish a stake in things.

As far as involvement in treatment decisions goes, not sure... those decisions are often made within the constraints of time and practicality; I don't know your system, but processes tend to have their own momentum. (Regarding referrals, tests, labs, but also, other things that move fast - e.g., reactions to medications can happen quickly, as the risk of interactions is greater in seniors, the window of efficacy smaller.) After the fact information shouldn't be a problem.

This care manager idea sounds excellent, though, if that's something you could do.

PoA is a good thing to have and get sorted now, before things get more complicated. I'd get it for property, too - that one doesn't mean you're taking anything away from your mom (or dad); it just means you can do things like pay bills on their behalf more easily when it's inconvenient for them - you're only meant to carry out their wishes. It's not like guardianship after a capacity assessment, different kettle of fish. PoA can just be thought of as putting you in the right position to be helpful when it's time for that kind of help to be needed. (And it's very quick and simple to do.)
posted by cotton dress sock at 10:52 PM on April 17, 2014 [1 favorite]

I've heard of cancer patients recording their doctors (openly with their consent) because of how easy it is to forget what you're being told in high stress situations. Could you get her either a smart phone or one of those small recorders and see if her doctor is ok with being recorded? That would likely give you one half of the puzzle and prevent misunderstandings.

And yes living will, power of attorney, get a lawyer while you can to get everything in order. Now is the time.
posted by whoaali at 4:37 AM on April 18, 2014

I work in a medical practice. Verbally requesting your own records is not enough, though a provider will often print out test results on the spot during a visit and hand over to a patient if he or she asks. Secretaries are the people who provide records, and they will not give any records without written release, even to a patient. There has to be a HIPAA paper trail for everything.

There is often a charge when you go this route, and in my practice a third party actually prints/copies/mails the records. It can take some time, like several weeks.

I'm in an academic medical school practice, so if your mom goes to smaller practices this might be less of a regulated process. POA is different, and would typically allow you to call providers and speak to them about your mom. Providers and you could then share information in an ongoing manner. We have a couple of patients whose daughters have full access and routinely interact with staff on behalf of their moms. Records release is a specific one-time snapshot.
posted by citygirl at 7:23 AM on April 18, 2014

If your mother's doctors are all within the same covered entity (health system) AND they share an electronic health record AND they have a patient portal, your mom might be able to allow you access to her medical information, online.

My patient portal (basically an interface) lets me see my test results, current conditions, current meds, and upcoming appointments, oh! And immunization records.

According to the website , I can fill out and submit a form if I want to provide a family member access to my records through the same portal.

There's even an app I can use to look up my records on my phone.(I can also email my clinicians, and request prescription refills.)
posted by vitabellosi at 8:09 AM on April 18, 2014

You didn't say in your question but on the off chance your mother has Kaiser, they have just started making clinician's notes available on their website. I get an email after I see a provider and I can log on and see the notes.

If you mom is covered under a large healthcare system, this might be an option. Good luck.
posted by Beti at 8:50 AM on April 18, 2014

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