1. Understand the law (link here) regarding the request of records. Click the link to learn specific details but basically, due to HIPPA laws, hospitals must release records at your request within 30 days of receiving that request and 60 days if you request a change in your record.

Know there are some records they cannot release including incident reports that one staff might have written up on another staff member, regarding your care. This is protected under the law and as much as you may dislike it, it's reasonable. We want hospital staff to feel safe about writing up incidents they see. If there isn't documentation and a complaint for a higher up to look at, then no improvements can be made. Therefore, try to see it as whistle-blower protection as we all want and encourage staff to hold one another accountable without receiving backlash. Depending on the hospital, record requests may cost or will be free. They can be mailed, put on disc, occasionally emailed or can be put into your patient portal. You can also pick them up as well.

2. When you're ready to submit your request your records, first find out if the hospital allows record requests to be submitted by email or through your electronic health chart (i.e. MyChart, Patient Portal). Either of these options offer protection, although we personally prefer to scan it in and email. If you do request your records through an electronic patient portal, prior to hitting submit for the last time, it should give a summary of what you've asked for. Print it and keep it for your records. DO NOT EVER, EVER, in our opinion, ask for records over the phone. No documentation can equal no records or proof of what you asked for. We also suggest you don't fax it. You need a record of what you sent. Email is best, requesting through the patient portal (some hospitals have, some don't) is second best. 

Some hospitals rely on the patient to know NOTHING about what should be in a legal medical record. Therefore, when you get your record you are led to believe it is all there when the reality is that it isn't. We could write a book on the different types of records and what to ask for but we're going to stick with our cause...surgical records. If you're missing ANY of these parts from a surgical record, they might be left out and we suggest you work with the hospital to get them and if you can't, move to the next level which is in place to make sure your rights are not being violated. Here's what a surgical medical record should include: 

1. Two signed forms (Inpatient or Outpatient)
-Informed Consent (you and a doctor signing a form which means you have been given all the information you need, both verbally and in writing, to make an informed decision about moving forward with the surgery.)
-Some sort of service agreement for payment and allowing the hospital staff to treat you.

2. Some sort of intake form (Inpatient or Outpatient)
A nurse will take vitals, weight, go over your current medications and when you last took them, whether you washed prior to surgery with a special soap, drinker, smoker, currently safe in your home, etc. There should be record of this.

3. Medication List (Inpatient or Outpatient)
List of medications and dosages you are on prior to surgery and/or admission. This is what the nurse will gather from you but it is a record in itself.

4. Something called a MAR. (Inpatient or Outpatient)
This means "Medication Administration Record." This is a VITAL component of any procedure. It must list all the medications administered, their times, by whom and what doses. We found the medication administrations to be crucial in telling us our son's story when we couldn't be there and he couldn't speak.

5. The operative report itself. (Inpatient or Outpatient)
There may be both a brief operative report and/or a full operative report. Getting the brief report alone is not okay. You are legally allowed access to the full.

The operative report itself will be written by the surgeon and will be written in narrative form. It should outline the steps the surgeon took for the prevention of surgical site infections as well as outline each and every step the surgeon took during your surgery. It should note any findings or complications and should tell all the steps taken during closing. The surgical team may list the medications they administered at the end of their surgical report or it may be put in the MAR. 

6. CASE NOTES. (Inpatient or Outpatient)
We believe this is one of the most important pieces of the medical record and can be found just before the operative report. The case notes tell what time everything happened as well as who was present in the room. It is the role of two different people (one from surgery and one from anesthesiology) to log what times everything happened. They are both responsible for listing WHO was present in the room when (which must give a time).

Have you heard the phrase, "If it isn't documented it didn't happen?" Well, we've learned the hard lesson this isn't always true but when it comes to the burden of proof...it's on them not you. They must document who is present during a surgery as well as who can give "attestations," meaning...who was there to attest to what happened. These case notes should also include a surgical count.

7. The Anesthesia Report (Inpatient or Outpatient)
This will look similar to the case events from the operative report. It will give the time of induction, time of procedure start, closing and end of anesthesia. It too should list who is present in the room including a CRNA (Certified Registered Nurse Anesthetist). The anesthesiologist does NOT have to be present during the procedure itself but must record prior to the procedure that he/she has reviewed your medications and medical history. The anesthesiologist must also document at the end of the procedure, showing your current status. Unless a case is highly unusual or complex, a CRNA is absolutely adequate to provide your anesthesia during the operation itself. However, the actual anesthesiologist must be on the floor and available in the case of an emergency. A GSA alone (Graduate Student Anesthetist), without a CRNA, we believe is against federal law.

8. Flow charts (Inpatient or Outpatient)
These record your blood pressure, pulse and oxygen saturation. Anything above a 95% or higher is considered normal for the Oxygen level. Anesthesia flow charts have a whole bunch of language we don't understand pertaining to the type of anesthesia the hospital is using as well as components of your breathing. There will likely be graphs to correlate with the flow chart and the graphs may include a spreadsheet showing what medications and IV fluids were administered during the surgical procedure and when.

Flow charts will also consist of different scales nurses use to rate pain, alertness, temperature, food/drink consumed, etc.  

9. All ordered medications
What each nurse or doctor ordered prior to the surgery (or during the inpatient stay). Cabinet overrides are all over our son's med lists from Mayo. We will plainly state we aren't secure in this topic but will share what we've made sense of from our reading. If anyone can add more or correct us, please PM us! We believe cabinet overrides don't have to be reviewed from a pharmacist first (a practice supposed to happen). We think these medications are given at the last minute, either because it's an emergency or there isn't time to have the pharmacy to go over it and  deliver it. Instead, they use something called a PIXIS (spelling???), which is basically a vending machine for meds located on the floor, to get the medication right away. We think.... 

10. Consult Notes 
f you're inpatient after surgery, you might need to have a doctor assess you from a different discipline. For example, while neurosurgery was our primary discipline in charge of Jack's care for this entire debacle, we had different doctors come in at different times to provide care and guidance. For example, neurology came in to do an EEG...there was a clinic note about what was done and what was found. Their infectious disease team was constantly involved and would write a note each day about Jack's current condition and their plan for care that day. Ophthalmology came, as did the speech evaluator, to see if Jack eat or drink safely...which just reminded me...we were never given that record from Mayo [insert angry face here]. There might be notes from a social worker if they're worried about your mental health because you're crying all the time from inadequate care and repeated mistakes. There could be notes from a case coordinator or Child Life (if you're in a Children's Hospital). Basically, any provider who services you as a patient should make record of that each and every time and this should be given to you if asked.

11. Labs
ALL your lab results.

12. Radiology
All your radiology results (CT scans, X-Rays, MRI, etc)

13. History and Physical
Somewhere in there it needs to state your condition prior to surgery to ensure you're healthy enough to have the surgery, as well as your general state of health. 

14. Discharge Papers
They should give instructions on how to keep your wound clean, should state signs to watch for infection, follow up information, the list of medications you're leaving on (including the ones you were already on). 

*Note...your actual record requests themselves are also part of your medical record. We literally had to send a medical record request asking for our actual medical record requests, to see what we asked for and identify what we didn't get. 
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Now that you know what BELONGS in your medical record, it's time for you to learn how to GET everything you need and are legally obligated to you, on a federal level, through HIPPA. 

First, you need the record request form. 

The easiest way is to get the form you need is through your hospital's website. There are different types of release forms depending on who is trying to obtain them.
-If you are requesting them for yourself or as a guardian, you want to fill out the basic Authorization Form to Release Medical Records.
-You might find also see a form that is titled, "Third Party Release of Medical Records," or something similar. That is what might need to be filled out if ant your records to be released to a law firm or if you want to give the media permission to discuss your case publicly for some reason. 

Sometimes the form is just flat out hard to find. Watch this short video I made to show the difference between two hospitals. I could never find the form on Mayo's website...only the third party form and even that was a chore. I ended up googling it and finding it in a PDF finder (and got it on my own). 

4.Next, call the records department and ask if they receive record requests through email (if you're not submitting it through a patient portal). We have found email is the best way to protect yourself because you can go back and see exactly what you requested. In our case we have proof that not only were things left out but also manipulatively added in, put in a place we'd never have gone to look for it because at the time we'd not even requested it because we'd requested it prior and months ago, leading us to believe it didn't exist. 

There were multiple times during the review of our son's case where we needed to go back and look for what we requested. Multiple times our son's records were removed from his patient portal after they'd been posted. Luckily, we took screenshots of everything (because our case was shady from the get go). Therefore, we still have the originals, which might not even be THE ORIGINALS. 

5. Fill out the form. When you get to the area where you can write in what you want, be sure to write the words... ALL UNABSTRACTED RECORDS.... This prevents parts of a report from being taken out. I liked to throw in a law on this line too, just so they knew they weren't dealing with a dufus and would take our requests seriously...45 CFR 164.501.

6. Getting anecdotal nursing notes from inpatient stays (what each nurse types during his/her shift) has always been difficult to do. They are part of a person's medical record so we don't know how hospitals can make this nearly impossible to obtain. And of course what you do get, you never are sure if that was all of them. We feel that we were given handpicked anecdotal nursing notes, not all of them. 

Below is an example of what a completed medical record request might look like.

If you don't get the information you have asked for, give it a go a few more times. At this point, email the request and follow up with a phone call, stating you know that x,y,z is part of your legal medical record yet it still hasn't been provided. Ask to speak directly with the Records Operations Manager. They will likely tell you he/she is in a meeting. In our experience, the higer ups are ALWAYS in a meeting, lol. Ask to leave a voicemail and do so. If you still don't get anywhere, you can take your complaint to the state or the federal level. We took ours straight to federal but are about to take ours to state due to manipulation/altering records. 

Here's where we suggest you take your complaint first if you can't get what you've asked for, after you've asked for it multiple times. We suggest you start at the federal level and work your way down if things are still being withheld. 

U.S. Department of Health and Human Services for Civil Rights
ocrportal.hhs.gov/ocr/smartscreen/main.jsf

​If you're still not getting what you need after 30-60 days, each state has their own department which manages patient health records release. Google your state name and then "complaints health care facilities and nursing homes." There should be a website that pops up with a government web address where you can submit a complaint. We're getting ready to do this ourselves.

**Know that the patient portal is more of a courtesy. They'll put up what they want to put up and take things down want they want to take them down (we learned from experience). It is no even close to your full, legal medical record so don't rely on it. The purpose of the portal is to give you simple basics, not detailed information if you need it. 

***You can also request itemized billing from the billing department at any time. This helps to prove what you paid for when it comes to drug administrations. It can essentially be another set of records to help you unlock key details. 

***Know that hospitals can "waste meds." In our son's case, we can see that rescue meds were pulled out of the cabinet at critical times but they are not listed on the medication administration record or our billing as being given.

We believe our son was given some of these meds "on the house" to save his life but that they weren't documented because it would be incriminating. Any med that is pulled as an "override" can be documented as a wasted med and basically, "thrown out" even though it was actually  administered (from our understanding). Of course this is illegal but that doesn't always matter. Although we do not believe this is a common practice, we do think it does happen and we believe it happened to our son.