What records should you keep after a brain injury?
Build a simple brain injury file, get your own records, and share them safely
In the weeks after a crash or a sports injury, the paperwork piles up fast. There are discharge forms, scan reports, bills, a new prescription and a list of names to call. When memory is one of the things the injury affected, keeping all of it straight can feel like a test you never signed up for.
Weeks or months later, someone asks a simple question. When did the headaches start? What did the CT show? Which medicine made you dizzy? If the answer lives only in your head, it may be hard to find, and that is not a personal failing.
This guide covers which records are worth keeping, how to get copies from your providers, and how to share them while you protect your privacy. It also looks at when a new test helps and when your old results already answer the question.
Why a brain injury file is worth the effort
The CDC says most people recover from a concussion within a couple of weeks [7]. For them, a thin folder may be all they ever need. Others have symptoms that last. People with moderate or severe TBI may have health problems that need care for years [8].
In a 2013 paper, two brain injury researchers argued that TBI belongs alongside other chronic health conditions, since it can keep changing long after the injury [1]. They called for finding problems early, treating them, and teaching people the skills to manage their own health over time [1]. A well kept set of records is one of the simplest tools for that kind of self care.
A 2019 study used national TBI Model Systems data on people with moderate to severe TBI who had inpatient rehabilitation and survived for 10 years or more after the injury [2]. Some of them declined over the years, while others improved or held steady [2]. The authors concluded that TBI deserves regular monitoring and, when problems appear, ongoing care like other long term conditions [2].
People with more serious injuries often come back into the health system. CDC figures describe people with moderate to severe TBI who were still living five years after the injury. Half had been admitted to a hospital again at least once, and one in three needed help from others with everyday tasks [8]. Each new hospital stay or clinic can mean a new provider who has never seen your earlier records.
Memory is the other reason. The CDC points out that problems after a concussion can be missed by the injured person, by family, and by health care providers [7]. A file holds the details when nobody’s memory can, yours included.
The core records to save
You do not need every page from every visit. Focus on the records that answer the questions new providers ask most often: what happened, what was found, what was tried, and how you are doing now.
Comparison compiled by Safety Behind the Wheel Foundation
Records worth keeping after a brain injury
| Record | Why it helps later | Where to get it |
|---|---|---|
| Emergency visit summary | Shows what was found on day one | Hospital records office or portal |
| CT or MRI report | Shows a new provider what was already checked | Imaging department or portal |
| Discharge and referral papers | Lists the plan and who to see next | Hospital or clinic |
| Results of memory, thinking, vision or balance tests | Gives a starting point to measure change | The clinic that did the test |
| Current medicine list | Helps prevent repeats, mixups and missed side effects | Pharmacy and prescribers |
| Therapy goals and progress notes | Shows what worked and what did not | Therapy clinic |
| Notes about daily life | Shows effects that office tests can miss | You and the people close to you |
Sources: CDC [5]; VA/DoD guideline summary [6]; Social Security Administration [9].
The injury itself
Write down the date, time and place of the injury. If it was a crash, note the type of vehicle, where you were sitting, and whether you wore a seat belt. Keep the police crash report number and any insurance claim numbers in the same place, even though they are not health records.
Also record what other people saw. Were you knocked out? Did you seem confused, ask the same question again and again, or have a gap in memory around the crash? Ask the person who was with you, or check the emergency report. Try not to fill gaps with guesses.
Scans and test results
Keep the written report for any CT or MRI. If you may see a new specialist, ask for the images as well. A normal report still matters, because it tells a future provider what was already ruled out.
Keep results from any memory and thinking tests, vision or hearing checks, and balance tests. These give your team a starting point. If your memory changes later, they can compare the new picture to something concrete.
Medicines and treatments
Keep one current list of every medicine you take, including over the counter products and supplements. For each one, note who prescribed it, when you started, and any side effects you noticed. When a medicine is stopped, write down when and why. Bring this list to every visit, and never change a prescribed medicine on your own. Talk with your prescriber or pharmacist first.
Therapy goals and progress
If a therapy team set goals with you, such as using a planner every day or going back to part time work, ask for a copy. Ask for progress notes and the discharge summary too. If you go back to therapy later, these pages let the new team pick up where you left off.
Notes about daily life that tests can miss
Testing usually happens in a quiet room, one task at a time. Daily life is louder and messier. The CDC notes that office tests of memory and thinking can miss a concussion that is truly there [5]. Short notes about real moments help your care team see how the injury affects your days.
These notes can count outside the clinic too. Social Security reviews medical evidence when it decides a disability claim for a brain or nerve condition. It also considers what you and others say about your limits, daily activities and efforts to work [9]. How often symptoms happen and how long they last are part of the picture as well [9]. If you deal with an insurer or another benefit program, ask what kind of evidence it wants.
How to write a useful note
A good note is short, dated and specific. Compare these two examples.
- Vague note: Memory bad this week.
- Specific note: Tuesday, missed a dentist visit that was on my calendar. I had not looked at the calendar since Sunday.
The second one tells your team what happened and hints at a fix, such as a daily calendar check each morning. Write down what helped as well as what went wrong.
You do not need to log every slip. One or two lines a few times a week is enough for most purposes. If tracking starts to make you anxious, cut back and mention it to your care team.
A composite example
Imagine a 41 year old delivery driver whose van was hit at an intersection. Her CT scan was normal. Her first memory screen looked fine. Two months later she keeps missing turns on routes she has driven for years. Twice she has left the stove on. She writes each event down with the date.
At her next visit, the notes help her care team decide on a referral to therapy and a check of whether she is ready to drive for work. Each state sets its own driving rules after a brain injury, so her team points her to the right process.
A partner, parent or close friend can add their own notes, with your OK. They may notice patterns you miss.
How to get copies of your own records
The HIPAA Privacy Rule is a set of federal health privacy rules. It gives you the right to look at your health information and to receive your own copy [3]. This applies to billing records as well as medical records [4]. In most cases you can ask for the copy in the form you want, such as by email [3].
How long it can take
A provider must act on your request no later than 30 calendar days after it receives it [10]. It can take one extension of up to 30 more days [10]. To do that, it must tell you in writing, within the first 30 days, why it needs more time and when it will finish [10]. Many offices move faster. HHS says providers can often send records much sooner than the deadline [3].
What it can cost
A provider may charge a reasonable fee based on its costs [11]. That fee can cover only certain labor for making the copy, supplies, and postage if you ask for mail [11]. You cannot be charged for the time staff spend searching for and pulling your records [11]. If your records are stored electronically, the fee cannot be set per page [3]. HHS guidance encourages providers to give people their records free of charge [11]. You also cannot be turned down because you still owe a medical bill [3].
Patient portals and the 21st Century Cures Act
If your provider has an online patient portal, it can be an easy way to download visit notes and results. The 21st Century Cures Act set the expectation that providers share electronic health records as a matter of course [12]. Its rules target information blocking, which means a practice that is likely to get in the way of your access to, or use of, electronic health records [12]. If you think a provider is blocking you, you can file a report online through the federal information blocking portal [12].
A portal may not hold everything. Ask the records office for anything you cannot find, such as scan images or records from another hospital. If a provider denies or ignores your request, you can complain to the provider, to your health insurer, or to the HHS Office for Civil Rights [4].
Checklist for requesting records
Checklist from Safety Behind the Wheel Foundation
- Ask the records office how it takes requests (online form, portal message or paper form).
- List the exact records you need and the dates of care.
- Say how you want them: portal download, email, paper or disc.
- Write down the date you sent the request.
- Put a reminder in your calendar 30 days later to follow up.
- Look over each record when it arrives and ask about anything that seems wrong.
- File the copy and note what you received.
Privacy, consent and sharing with family
Your records are about you. You get a big say in how widely they travel. This matters after a brain injury, because many people lean on a partner, parent or friend to help keep track of care.
What providers may share without a signed form
HIPAA lets a provider talk with a relative or friend who helps with your care or pays for it [13]. This is allowed as long as you do not object [13]. If you are hurt and cannot give permission, the provider may share if that seems to be in your best interest [13]. A provider does not have to share your records with family unless that person is your personal representative under the law [13]. Ask the records office what papers it needs before it will treat someone that way.
Sending records where you want them
You can ask a provider to send your information straight to others, such as a family member, a caregiver, a mobile app or a researcher [3]. This saves you from carrying papers back and forth. Before you link a health app, read what it does with your data and who it shares it with.
The federal information blocking rules also include a privacy exception, which lets a provider limit access in some cases, such as when a patient asks for tighter limits on sharing [14].
Practical ways to share safely
- Pick one trusted person as your records helper, and tell your providers who that is.
- Ask each clinic which form it needs if you want that person to get records or speak with staff.
- Share a one page summary when the full file is more than someone needs.
- Keep sensitive pages, such as counseling notes, in a separate folder if you prefer.
- Review who has access once a year and after a breakup, a move or a job change.
Using your file to avoid repeat scans and tests
When you see a new provider, it can be tempting to ask for a fresh scan or a full set of memory tests just to be sure. Your file helps your team sort out what is new and what earlier tests already answered.
Scans
The CDC says a CT scan of the brain is not needed to spot a concussion [5]. It may still be used when a person is at risk for bleeding in the brain [5]. If your earlier scan report is in your file, a new provider can see what was checked and when. Whether a new scan makes sense is a medical decision, usually tied to new symptoms or findings.
Memory and thinking tests
The VA and Department of Defense published a guideline for mild TBI in 2021. It suggests against full neuropsychological testing (a detailed set of memory, attention and thinking tests) in the first 30 days after injury [6]. It also suggests against computerized concussion screening batteries for routine diagnosis [6]. For memory, attention or planning trouble that lingers once other causes have been dealt with, it suggests trying a brief course of cognitive rehabilitation with a trained provider [6].
A new test is most useful when its results could change your care. Reasons to ask about a new assessment include:
- New memory or thinking problems, or problems that are getting worse
- Planning a return to work, school or driving
- Starting or finishing a rehabilitation program
- A new illness, medicine or head injury that could affect thinking
Bring your earlier results to any new testing so the team can compare.
Get emergency care right away
After any new blow to the head, watch for these CDC danger signs [7]. If you or the person you are with has any of them, call 911 or get to an emergency room at once.
- A headache that gets worse over time and does not fade
- Weakness, numbness, poor coordination, convulsions or seizures
- Vomiting again and again
- Slurred speech or strange behavior
- Pupils of unequal size (the black dot in the middle of each eye)
- Not recognizing people or places, or growing confused, restless or agitated
- Passing out, extreme drowsiness, or no response when someone tries to wake the person
A one page summary for every new provider
A full file can grow thick. A one page summary sits on top and gives a new provider the main facts in a minute or two.
What to put on your summary page:
Checklist from Safety Behind the Wheel Foundation
- Your name, date of birth and the date of the injury.
- How it happened, for example a car crash as the driver.
- The diagnosis you were given and the main scan or test findings.
- Your current symptoms, especially memory and attention problems.
- Current medicines and allergies.
- Names and phone numbers of your main providers.
- Your current therapy goals.
- Anyone you have allowed your providers to talk with.
Paper, digital or both
Pick the system you will keep using. A binder with tabs is easy to grab on the way out the door, while a phone folder or secure cloud drive goes everywhere with you. Some families keep paper at home and photos of each page on the phone. If you store records online, use a strong password and turn on two step login.
A short routine keeps the file current. After each visit, drop new papers in one tray or snap a photo of them. Once a month, spend 15 minutes filing them and updating the summary page. If that feels like too much right now, ask your records helper to do it with you.
Questions to ask your care team
Question checklist from Safety Behind the Wheel Foundation
- Can you give me a written summary of today’s visit before I leave?
- Which of my test results should I keep a copy of?
- Would a new scan or test change my care, or do my earlier results already answer the question?
- How will we know whether my memory is getting better, staying the same or getting worse?
- Who else on my care team should get a copy of this report?
- What is in the patient portal, and what do I need to request from the records office?
- What form do I sign so my partner or parent can talk with you about my care?
- What changes should make me call you before my next visit?
- Should I have a driving assessment before I drive again, and who does that here?
Frequently asked questions
How long does a provider have to give me my records?
A provider must act on your request within 30 calendar days. It may take one more 30 day period only if it tells you in writing, within the first 30 days, the reason and the new date [10]. Many offices send records much sooner than that [3].
Can a hospital refuse my records because I owe money?
No. HHS says you cannot be denied access to your health information because you have not paid a medical bill [3]. The provider may still charge a reasonable, cost based fee for the copy, though HHS urges providers to give copies free of charge [11].
Should I ask for a new brain scan to compare with my first one?
Usually there is no need to repeat a scan as a routine step. A CT is not needed to spot a concussion and is mainly used when bleeding is a concern [5]. If you have new or worsening symptoms, your provider can decide whether a scan is needed. Your earlier report helps with that choice. For danger signs, call 911 [7].
If my concussion got better fast, do I still need to keep anything?
Most people bounce back from a concussion in a couple of weeks [7]. Even so, keep the emergency summary, any scan report, and a note of the date and how it happened. People with several concussions may take longer to recover. So a record of past injuries can help if you are hurt again [5].
The bottom line
Recommendation from Safety Behind the Wheel Foundation
You do not need a perfect filing system. Start with a simple folder. Add the injury details, scan and test reports, your medicine list, therapy goals and a few dated notes about daily life. That will answer most of the questions a new provider asks. Put a one page summary on top and update it when things change.
You have a legal right to your records. You have a strong say in who sees them. Use that right early, while the details are fresh, and ask a trusted person to help keep the file current.
Sources and further reading
- 1Corrigan JD, Hammond FM. Traumatic brain injury as a chronic health condition. Archives of Physical Medicine and Rehabilitation. 2013;94(6):1199-1201. doi:10.1016/j.apmr.2013.01.023. Abstract via Model Systems Knowledge Translation Center. msktc.org/…/traumatic-brain-injury-chro…
- 2Malec JF, Ketchum JM, Hammond FM, et al. Longitudinal effects of medical comorbidities on functional outcome and life satisfaction after traumatic brain injury: an individual growth curve analysis of NIDILRR Traumatic Brain Injury Model System data. Journal of Head Trauma Rehabilitation. 2019;34(5):E24-E35. doi.org/10.1097/HTR.0000000000000459
- 3U.S. Department of Health and Human Services, Office for Civil Rights. Get it. Check it. Use it. (Your right to access your health information). Reviewed July 2026. hhs.gov/…/index.html
- 4Office of the National Coordinator for Health Information Technology. Your health information rights. Updated April 2026. healthit.gov/…/your-health-information-rig…
- 5Centers for Disease Control and Prevention. About mild TBI and concussion. Updated September 2025. cdc.gov/…/index.html
- 6American Speech-Language-Hearing Association. Evidence Maps summary: VA/DoD Clinical Practice Guideline for the Management and Rehabilitation of Post-acute Mild Traumatic Brain Injury, version 3.0. 2021. apps.asha.org/…/f28e156a-8117-ee11-8145-005…
- 7Centers for Disease Control and Prevention. Symptoms of mild TBI and concussion. Updated September 2025. cdc.gov/…/index.html
- 8Centers for Disease Control and Prevention. About potential effects of a moderate or severe TBI. Updated May 2024. cdc.gov/…/potential-effects.html
- 9Social Security Administration. Disability evaluation under Social Security: 11.00 Neurological, adult (listing 11.18, traumatic brain injury). ssa.gov/…/11.00-Neurological-Adult.htm
- 10U.S. Department of Health and Human Services. How timely must a covered entity be in responding to individuals’ requests for access to their PHI? Reviewed June 2016. hhs.gov/…/index.html
- 11U.S. Department of Health and Human Services. May a covered entity charge individuals a fee for providing the individuals with a copy of their PHI? Reviewed May 2025. hhs.gov/…/index.html
- 12Office of the National Coordinator for Health Information Technology. Information blocking. Updated April 2026. healthit.gov/information-blocking
- 13U.S. Department of Health and Human Services. Family members and friends (HIPAA for individuals). Reviewed December 2022. hhs.gov/…/index.html
- 14Posnack S. Information sharing after the 21st Century Cures Act. Health IT Buzz, Office of the National Coordinator for Health Information Technology. November 2021. healthit.gov/…/information-sharing-after-t…
This article reflects the safety priorities of brain injury recovery and road safety education. It is general education, not medical or legal advice, and it cannot replace care from your own treatment team. Records rules and forms differ between providers, so check official sources such as HHS and talk with your care team about your own situation. Reviewed October 2026.
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