This post is part 3 of a series describing the four key types of tools that I recommended to caregivers at a retreat earlier this summer:
- Journal/notebook, for notes and symptom tracking (see this post for details)
- Portable and up-to-date medication list (see this post for details)
- Organizer to keep copies of medical results and medical records
- Personal/family task organizer
In this post, I’ll explain why it’s important to keep copies of medical results and key medical records. I’ll then explain which kinds of medical information is most useful to keep, and I’ll describe a few ways that caregivers can do this.
Why caregivers should keep copies of medical results & key health information
[Related post with more details: How to Use a Personal Health Record to Improve a Senior’s Healthcare]
Information is power and flexibility. When caregivers keep copies of medical results and key information, it’s easier to:
- Make sure a doctor has the latest important information, right at the time of a medical visit. This is especially helpful in case of an unexpected trip to the emergency room or to urgent care.
- Change doctors or get a second opinion. Sometimes it’s necessary, or desirable, to see a new doctor. Doctors can usually get medical information from other doctors, but it often takes time. When caregivers are able to bring key information along with them, a first visit can be much more helpful.
- Learn to better understand a medical condition. For many medical conditions, especially chronic ones, the status and progress of the condition often correlates to the results of bloodwork or other tests. (For example, diabetes control is often measured via testing the hemoglobin A1C level in the blood.)
- By keeping copies of results, those patients and caregivers who decide to learn more about health conditions — such as by learning from the Mayo Clinic’s site, or joining a patient community) are better able to understand the specifics of their conditions.
- When patients and caregivers develop a better understanding of their health conditions, they can then participate more actively in monitoring and managing their healthcare.
- Double-check the medical care. Although most medical care is good, sometimes things do fall through the cracks or get missed.
- When patients and caregivers have copies of the key medical information, it’s easier to double-check things and ask the doctor if you have any questions, or don’t understand an abnormality in the results.
The most useful types of medical information to keep copies of
In my own clinical work, I see lots of older patients who’ve been seen by other doctors. Here is the kind of information that is most helpful to bring:
- Laboratory results. This means results of blood tests and urine tests. If you want to minimize your time collecting health information and want to know what’s most important and useful, this is it!
- Bloodwork results are especially useful, since they often include information related to blood count, kidney function, and blood electrolytes. For more on the most common blood tests ordered for older adults, see Understanding Laboratory Tests: 10 Commonly Used Blood Tests for Older Adults.
- At a mimimum, try to have a copy of the most recent results. Even better is to have copies of the last three reports, or copies of results from the past 1-2 years.
- Radiology results. These include results from tests such as xrays, CAT scans, MRI scans, and ultrasound tests.
- Having these results handy may prevent duplicate tests from being ordered, and also gives doctors better information at the time of a visit.
- Cardiac tests. These include tests such as EKGs, echocardiograms (which are ultrasounds of the heart), and tests for coronary artery disease, such as treadmill tests or special heart imaging tests.
- I find I use echocardiogram reports quite often in my medical decision-making, but all these test results can come in handy when trying to help an elderly person with symptoms that might be related to the heart or lungs.
- Pathology reports. Any time doctors do a biopsy, a pathology report summarizes the results. The results are usually needed to make sure a person gets the right care for the issue that caused the biopsy.
- Hospital discharge summaries. These are the clinical summaries written or dictated by doctors and nurses, and are meant to be read by other health professionals. (The discharge information packet that patients are usually sent home with is a very weak, watered down version.)
- They can contain excellent summaries of an older person’s chronic medical conditions, and also contain all important information about why a person was hospitalized, what happened in the hospital, and what should happen after the hospitalization.
- These are usually much harder for lay people to read than are test results.
- I recommend caregivers and elders try to get a copy of hospital discharge summaries so that they can share with another doctor on short notice if needed.
- Other clinical notes. These might include records such as office visit notes from the primary care doctor or other specialists, as well as notes from physical therapists, counselors, and other healthcare professionals.
- The usefulness of these notes is variable, and doctors often find looking through a big stack of such notes tiresome.
- Although I do request and look at records from other doctors, I don’t usually recommend that caregivers try to keep copies unless it’s easy for them to keep and organize the notes.
- Advance directives. These documents are meant to provide guidance for situations when a patient is too ill to make medical decisions. (Although it’s specific to Washington State, I really like GroupHealth’s page on the topic, because they correctly state that advance directives are not just about being terminally ill.)
- If there is a POLST, an advance directive, a living will, or a form regarding durable power of attorney for healthcare, it’s good to include a copy with the collection of medical information.
In a special class of its own is the up-to-date and portable medication list, which I wrote about in a previous post.
You may also want to include information such as allergies, a record of chronic conditions, and a list of past surgeries. However, I don’t really emphasize this to my patients because it is pretty easy to get much of this information from the patient or caregiver at the time of a visit, whereas people almost never know their latest lab results off the top of their head.
You can learn more about what information to gather and bring to doctors here: 10 Useful Types of Medical Information to Bring to a New Doctor.
Now that we’ve reviewed the types of medical information that patients and caregivers can keep copies of, let’s talk about how to organize and keep this information.
How caregivers can maintain a personal health record for an older adult
When patients keep their medical information themselves, this is a personal health record (PHR). Unlike the electronic health records that patients access through a patient portal, a personal health record is usually under the control of the patient and family, rather than controlled by a single doctor or clinic.
The advantage of this is that older adults can combine information from different providers in a PHR, and can keep their key medical information available even if they change doctors.
When choosing a way to keep and organize an older person’s health information, here are some things to keep in mind:
- How easy is it to bring the information to a doctor’s visit? Is it easy to print or make a copy of results? Can you invite other doctors and nurses to see the information?
- How secure is the information? For information kept online or on computers, encryption helps keep the data safe (although many people consider it a hassle to encrypt information on their own computers).
- How easy it is to share the information with a care circle? Many older adults have multiple family members involved in their medical care. Families also sometimes want to give temporary — or partial — access to a third party, such as a care manager.
And here are some options that caregivers can consider, to actually keep and organize records:
- Paper binder. This is an oldie but a goodie when it comes to organization, and I’ve seen it work for a number of families.
- Pros:
- Cheap and easy to set up.
- Copies of records are often given to families in paper form.
- Can use tabs to organize records within binder.
- Easy for another doctor to flip through records at a visit (especially if you use a three ring binder instead of a file folder). Also relatively easy for doctors to photocopy any records they want to keep a copy of.
- Cons:
- Binder can be lost; labor intensive to keep a back-up copy of records.
- Harder to share among multiple families members or caregivers.
- Can’t use digital technologies to search through a larger stack of records.
- Pros:
- Generic digital document storage system. Some families scan all records and save the PDFs in a folder on their home computer. This method can serve to back-up a paper binder system.
- Pros:
- Documents can easily be backed up online; this can allow sharing/access by other family members.
- Documents can sometimes be emailed to clinicians, or uploaded to a patient portal.
- Cons:
- Can be hard to later sort through records, especially if files haven’t been carefully named.
- Can be hard to bring all records to a doctor’s visit.
- Pros:
- Personal health record online. These are websites designed to store health information from different providers. Some have apps to allow mobile access to the information.
- Microsoft HealthVault is a well-established PHR, and is free. Other PHRs that I’ve briefly looked at online include CareSync and MyKinergy; and many more are available.
- Pros:
- Data is encrypted, and usually organized into useful categories (i.e. lab results, imaging results)
- Some services can import data from other apps or websites. Most can import a patient’s data using Medicare’s Blue Button data export tool.
- Some services allow families to fax or send documents to doctors.
- Cons:
- Entering results and information into an online PHR may feel time-consuming.
My main recommendations regarding keeping and organizing medical information
I do always recommend that patients and caregivers maintain some kind of personal health record (PHR), in which they at a minimum keep copies of test results.
It is perfectly ok to just maintain a folder or binder with this information on paper. However, keeping digital copies of the information provides a good backup. If you find an online PHR that makes it easy to enter information, this is a good option too.
If as a caregiver, you ever need to take an older person to see a doctor on short notice, having test results and an up-to-date medication list will go a long way towards ensuring that doctors can provide the right medical care.
How do you keep track of medical information?
If you’re a caregiver, I’d love to know how you’ve been keeping track of medical information.
If you’re a clinician or care manager, how do you recommend caregivers keep information?
Last but not least, here are some related articles you might find useful:
How to Use a Personal Health Record to Improve a Senior’s Healthcare
10 Useful Types of Medical Information to Bring to a New Doctor
Understanding Laboratory Tests: 10 Commonly Used Blood Tests for Older Adults
10 Things to Know About HIPAA & Access to a Relative’s Health Information
Many of my clients prefer using a binder or notebook. I have my clients tape a large “IF FOUND, PLEASE CONTACT…” note on the inside of their binder in case it gets lost. Most people realize how important this information is and will contact the person to let them know their binder has been found!
Great article, thanks!
I’m putting a lot of thought into what to do with my binder these days, currently trying to use my ipad, hopefully it’ll work…
found this mayo clinic post, it was a bit helpful http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/cancer-survivorship-plan/bgp-20092709
Thanks again!
Thanks for sharing !
I’m a caregiver to my mother in that I go with her to all her doctor visits & keep a notebook (4 inches) that has all her doctors’ notes (5 in all), hospital visits/ER visits & tests. The notebook grew from a smaller one to the 4-inch one because during her last hospital visit, the doctors were asking me questions that I didn’t know the answers to & didn’t have that specific doctor’s records to help them. Believe me, I got on that right away while she was still in the hospital & it stayed with her at the hospital until she came home.
I also keep an updated list of her medications with allergies listed as well as a 3-page typed-out present, past medical, past surgical, family & social history.
There is a notebook-sized business card holder for her appointment cards.
My problem is now that that 4-inch notebook is becoming heavy to carry, but as sure as I put all the different dividers into individual notebooks & take that particular notebook with us to that particular doctor, he’ll want to know what one of the other doctors said or what the most recent tests showed & I won’t have that information. Is there something out there like a PDA or something where I scan the paper copies onto our home computer, then put the scanned copies on the device as well as a calendar in order to keep her appointments?
Like the idea above about putting a “please return to…” sign on the notebook; never thought about it getting lost.
Thanks for your help.
Thanks for sharing your story, and kudos for organizing yourself and having all this health information on hand.
It sounds like you have become the “health information exchange” for all your mother’s doctors; I imagine it’s burdensome for you, but I’m sure this has been good for your mother’s health and care coordination.
If the binder is becoming heavy, I would definitely encourage you to try switching to a digital format. You can look into the online personal health record services that I mention above.
I will also try to investigate options soon, and if I come across anything useful, I’ll try to update this comment.
I’m a personal caregiver and house manager, for mostly hospice patients. I use several binders for my patients. Usually color coded. My large blue binder is the Aids binder.. Shift notes, tabbed by month. Time sheet, schedule, careneeds, medication log and important info—patients name address..important phone numbers etc. My Red binder is for medical information. Dr apt, testing, schedules, medications and insurance. This binder has 2 large pouches, one blue, one red, both have extra compartments. Blue pouch is for house receipts, grociereies in one and household receipts in the other. i.e cameras, monitors, ramps etc. The Red pocket is for medical receipts like medication, equipment and medical visits. These binders make it easy to grab and go. I also make a EGGB.. emergency grab and go bag. It stays ready at all times. Mini oxygen tank, meds, personal hygiene needs, toiletries, protein shakes and bars, water bottle, clothes and mini binder. All packed nice and neat. I learn as I go, what to add and what to omit. Remembering each patient is different.
Thanks for sharing these excellent suggestions!
I have organized mine and my family health records electronically using a free app called healthmemo. This is very useful during emergencies. No more worries to carry paper records where ever you go.
I am glad you’ve found something that works. You do seem to work for the company however, so this should probably be disclosed to the other readers.
Hi Leslie, good article! I’ll bookmark it for reference!
Updating paper or electronic records became too labor intensive. Also, Mom’s new doctors weren’t crazy about reading a couple of inches of paper medical records that I did keep.
I tried Google Health and Microsoft’s Health Vault. My mom’s retail pharmacy offered a digital link, but her doctor’s didn’t which meant manual entries which didn’t happen.
Last year, I switched my mom to Kaiser. I don’t work for Kaiser, but am a patient as well. One-stop shopping for medical visits has saved time and stress for me and my mom. Being able to access your HMO’s centralized medical records is accurate and easy. The notes aren’t extensive, but it’s easy and better than nothing. Kaiser’s visit receipt tells you when the next immunizations, mammogram, etc. should be done. This is easier and more timely than me trying to remember. The con is I wasn’t able to export the data when I switch insurances a few years ago. That may have changed by now.
Offline, I have a single sheet summary of my mom’s medical providers with contact info, allergies, current meds, and insurance.
I would be interested in an app that records the visit since I don’t remember instructions. For now, I may record the visit on my phone, save the recording in Evernote and call it a day.
Thanks for this comment. Yes, Kaiser has a lot of advantages and I have referred people there. In the Northwest region Kaiser decided to share all clinical notes with patients, but here in Northern California they aren’t doing that (yet).
The instructions thing is tough. Doctors are mandated to provide a visit summary but I find it’s often not very useful. I have heard of patients using Evernote as a personal health record, and you can take pictures of any handwritten notes you take.
Do let me know if you ever come across a better solution. Also, I have a more recent post about personal health records here: How to Use a Personal Health Record to Improve a Senior’s Healthcare.
Great Article. Thanks for the info, super helpful. Does anyone know where I can find a blank “durable power of attorney for healthcare form” to fill out?
Durable power of attorney for healthcare (DPOAH) forms are state-specific. You can find them by googling “advance directive” and the name of your state. Do try to look at several. Here in California there are number of forms that meet the state’s criteria, and some are easier to work with than others. For instance, for my state I prefer the Easy-to-Read California Advance Directive.
I also recommend families go through PrepareForYourCare.org before completing the documents, as this provides a framework to help seniors consider their preferences and values before completing legal paperwork.
Hey Christian I found a blank fillable durable power of attorney for healthcare form here:http://pdf.ac/51BlXu
I cirrently have 20 years of papers containing test results. Mostly Ct scans reports and hearing tests due to problems In those areas. How many should I really keep? Do I ever need information contained in a CT scan report from 20 or 10 or even 5 years ago? I am thinking I can discard everything except maybe the latest 2 or 3 scans reports?
Hard to say how useful the information might be without knowing more specifics. Results from several years ago can be very useful, because sometimes we are trying to see whether a given finding is new/recent, versus there for many years.
If it’s not a horrible hassle, I would encourage you to scan the whole pile and keep it in a secure online personal health record. Microsoft Healthvault has been around for a long time and probably will not go anywhere soon. You can also keep a digital copy offline, which some people prefer as that is potentially more secure.
You can then keep just a few scan reports in your notebook or in whatever organizer you are carrying around, but that way if someone ever wants to review your past results, you can dig them up.
FYI from HealthVault:
Thank you for using HealthVault. As of November 20, 2019, HealthVault will no longer be supported. Please see the notice you may have received. If you have any questions, please reach out to HealthVault Customer Support.
Yes, I did receive that notice earlier this year. I’m not surprised, in that the service seemed to be quite neglected by Microsoft. But I think it’s too bad they didn’t opt to improve it instead.
If you find an alternative, please let me know.
Your tool recommendations (journal/notebook, up-to-date medication list, medical organizer & task organizer) underscore essential information for caregiving. These tools allow caregivers to answer the 5Ws of caregiving:
• Who are the caregivers (& who are the care providers)?
• What medication needs to be taken (or activity performed)?
• Where is the cardiologist located?
• When does the medication need to be taken (or the activity performed)?
• Why was the medication prescribed (or activity prescribed)?
Ideally, all this information would be securely available both on-line and in printable form. Ideally, this information would be linked together and searchable.
I would say those are 5Ws about managing a chronic medical problem, as they are things a patient should address as part of his/her active participation and monitoring of the healthcare plan for a given problem.
Managing one or more chronic health conditions is really like managing an important ongoing project…indefinitely. Unfortunately clinical health record systems are not really designed for this (they are designed for episodic care and population health management and of course billing and administrative data gathering). Personal health tools don’t seem great at this either.
Family caregivers can end up taking on any — or all — aspects of a patient’s “self-healthcare,” as you clearly know. So enabling family caregivers to track the various important pieces involved in managing one or more chronic conditions is indeed very important. But it’s hard to do well and easily…
Highly informative post, Leslie. Thank you.
We are also educating and empowering youngsters to take charge of their health and medical records. That way, they become better informed about their health status, now that they are young and when they get older.
As the youngsters are more techy oriented, we encourage them to use a simple digital health records tool, ‘My Medical eCard’.
Looking forward to reading more of your posts.
Sadé Tolani
My Medical eCard
I find Kaiser Permanente’s online patient records to provide everything I need for my 89 year old mother and my 70 year old sister-in-law. Medication list, test results, past visits & more all accessible on my smart phone anywhere anytime. I wish my personal medical group would do that.
Glad you are satisfied with KP’s online portal. I myself have often been dissatisfied with the KP patient portal, as here in Northern California it does not show lab results from the ER or hospital. It also does not provide an easy list of the person’s vitals (blood pressure, pulse, weight) over time.
However those issues may be specific to the way KP has set up portals in my region. Apparently KP in the Northwest allows patients to see full clinical notes, which is very progressive and to be applauded.
We also recommend seniors use a hidden key lock box so that EMS does not have to break down the door – you can store a key in the lock box, and a list of medications, or a note that references where you keep your medication list.
A lock box to help EMS sounds helpful, although I don’t yet know how often those are effective in helping EMS get in without damaging a door.
Re a medication list, I would not recommend keeping one in the lockbox because as is, I find older adults and their families have a lot of difficulty maintaining an up-to-date medication list. Most older adults experience frequent changes in their medication list and it sounds hard to keep a list in the lockbox uptodate.
Organizing information specially the laboratory reports can come handy at the time of emergency. I follow it at my home too and advice everyone to do so.
as a veterinarian I know the importance of complete medical records. I’m glad that you brought up Leslie the probable incompatibility of medical digital records. You did not say it outright but I know of no MD who will let anyone plug in a flash drive to their system atthe office just to gain additional medical specifics on a patient. One and all are concerned about viruses, Trojan horses and other Invaders. Therefore I have used paper medical records for myself and for any seniors I have assisted. Inevitably the most important sheets – Medications, OTC, Topicals Used by patient – NAME. Document prepared by – NAME. Date last
I agree that most doctors are not very interested in plugging a flash drive, although I suspect the issue is time more than concern about viruses.
I remember once inserting a patient’s medical records CD into the computer. There were multiple PDF files with titles I didn’t understand. It is time consuming to go through such files; much better to flip through printed records as it’s easier to see what’s there.
For more on what I recommend people bring to doctors, see “10 Useful Types of Medical Information to Bring to a New Doctor“
Fortunately and thankfully, all of my husband’s doctors are affiliated with the same hospital (Wm. Beaumont Hospital in Royal Oak Michigan). When he needs a new specialist, we only select from their “Find a Doctor” list or ask another of his Doctors. This is not mandated by his Insurance–it’s our choice. Their records are part of Epic’s electronic system which every Doctor can see and add to. If we are out of town, I can access his records and print out test results if needed. The only things I carry are his insurance ID cards and a one pager (both sides) I typed up listing his meds, procedures, allergies, emergency contacts, insurance numbers, and all of his doctors with their name, specialty, address, fax and phone numbers. I file the visit summaries but don’t have to carry them to appointments because Doctors can access them on-line. For that reason, I’m a big fan of the move by health care providers to electronic records. I know it was costly, but I believe it results in better care.
Yes, it can be very helpful to have all one’s doctors within the same system and sharing an EHR such as EPIC.
Another advantage of electronic records is that provider records have become more legible, both to other providers and also to patients, should they decide to look at or request clinical notes.
Up to now I’ve used a flash for storage. Are these online systems more accessible and useful to a dr? I guess I can ask my pcp. My records are minimal as I rarely go to a dr.
Great site. Thanks!
Great idea to ask your PCP. Many online health records systems have a way to print or email info to a doctor, which can certainly make things easier. I have occasionally been handed a flash drive or CD-ROM by a patient, and it is a hassle. But see what your doctor suggests.
If you don’t go to the doctor often, then the most important thing is to keep copies of the records you do have for yourself. If you keep them on a flash drive or other small object, you’ll have to be careful to not lose the object.
For more on the benefits of keeping copies of your health information, see How to Use a Personal Health Record to Improve an Older Person’s Healthcare. Good luck.
Nice info. I will keep in mind. Thanks for share.
We fired the company that provided caregiving to my parent, and they removed the binder that held her daily records for over a year! It also included records from other caregivers that weren’t under their employ.
They likely purchased the binder. How should this be handled?
Hm. I assume you’ve asked to have the records back and they’ve refused? In this case I would encourage you to be polite but persistent, and also try to keep all communication via email or writing, since this gives you a better record of your correspondence. Some things you can try:
– Tell them the records from other caregivers are not at all theirs, and so should be returned to you
– Tell them you need the daily records that they completed, to ensure good medical care for your parent. Insist that they explain why they are refusing to provide the records, given they are relevant to your parents health and medical care.
– Ask your parents doctor to give you a short letter stating the daily caregiving records are necessary to coordinate your parent’s health and wellness care. Send this letter to the agency. (This may be better than asking the doctor to call the agency; you could have trouble knowing if/when the doc called and what he/she said.)
– Tell the agency you are considering taking additional action against them
I think it’s especially important to emphasize that you need these records for your parent’s health and wellbeing. Even if you are dissatisfied with the agency, it’s probably not productive to leave them feeling that you want to pore over the records to figure out what they might’ve done wrong.
For the future: consider regularly making copies of what’s in the binder.
Good luck!
Hi Leslie!
Really enjoyed your article. I’ve been the caregiver for my daughter for the past 14 years. I came across your article while doing research on putting together a medical notebook checklist.
I created a notebook for her years ago with all the items you’ve mentioned in your article. Recently, I
created a course on being your child’s healthcare advocate. Part of the course deals with creating a medical notebook. I’ve also created a website to house my course, parent forums, articles related to patient advocacy, and various patient advocacy resources.
Part of the patient advocacy resources that I’m providing is various forms that parents and patients can use to help them keep track of their health. Ultimately, I’m encouraging them to place these forms in their medical notebooks (either physically or electronically).
I appreciated you mentioning Microsoft’s HealthVault. It’s a great idea, and I can’t wait until there is more uniformity of medical records across the nation. I’ve looked at some of these health storage apps, but I still haven’t found any that I’m absolutely crazy about, Each has their own format for inputting your information, and many won’t allow you to upload other digital documents. But, at the end of the day, until there is a nationalized standard for medical records, it will be difficult for patients to track their medical information across the nation.
Again, I enjoyed your article and insights. You helped me to confirm that I am on the correct path for creating a medical notebook checklist.
Thanks!
Taylor
Sorry to hear you’ve had to oversee your daughter’s medical care for so many years. That is a rough road that most parents don’t have to walk. I hope she is ok now.
There are other parents doing similar work to what you describe, perhaps you have already found them and connected with them. Good luck with your project!
Fairly new on this Journey of dealing with my 93 year old grandma and a new diagnosis of Alzheimer’s disease. This has been a challenge to say the least but we have decided as a fact to keep her at home. This article gave me an idea of just what I was searching for in order to keep track of her medical issues as opposed to all of the medical concerns that are going on in the home. The worse is dealing with her talking and hallucinations at night and then not remembering it in the a.m. Sometimes I question am I able to do this.
Thanks for sharing a bit of your story. Your grandmother is lucky to have you looking out for her. It is indeed often a hard journey. Fortunately, although many say it’s among the hardest things they’ve done, they also often say it ended up being among the most rewarding.
In terms of taking care of yourself and of your grandmother: the medical issues are important but honestly the issues that happen at home are often even more important. Here are some articles on the site that might be helpful to you:
How to Plan for Decline in Alzheimer’s Dementia:A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
5 Types of Medication Used to Treat Difficult Dementia Behaviors
You should make an effort to get yourself some support and some training on being a dementia caregiver. The AgingCare.com website has a very active caregiver forum, with people in your situation. And a good book or two can help you learn to manage common caregiving challenges; I like Surviving Alzheimer’s, by Paula Spencer Scott. Good luck and take care!
Hello Lisa,
I would also like to offer searching for an Area Agency on Aging in your area. The agency sometimes goes by other names, but if you google it, it should come up. They offer a Caregiver support program and supportive aging resources.
I hope this helps, and I wish you well on your journey. Take good care.
Jenn
How does one go about obtaining personal health records? I have been trying to get paper copies of everything I can going back at least 10 years, but the medical facility where I was treated for 50 some years, has recently sold and are in the process of sending all old files to the salt mines. The new owner has just started out with whatever new tests, diagnostics, etc. They did not seek to “carry over” any of the old files. I called the facility and got a big runaround on how difficult it would be to get a copy of all my paper and digital records they still have on file. It would take too much time, or would cost me too much or any of several excuses. She found one EKG that she said was 16 pages alone. I have been trying to download or copy what I can from my different patient portals, but it only goes back to 2015. (I now have 3 portals since I moved to a new facility when my Dr leftover a year ago.)
Oh, that does sound frustrating.
To obtain copies of your health records you need to be persistent, and it also helps to be aware of — and potentially remind your health providers of — relevant laws regarding your right to access your health information.
At the federal level, these rights are largely guaranteed by HIPAA, and then state law also usually addresses a patient’s right to medical information and provider responsibilities in maintaining and providing access.
I have written more about HIPAA here: 10 Things to Know About HIPAA & Access to a Relative’s Health Information
I would definitely recommend checking with your state regulations on patient access to medical records. Just because they say it’s so difficult doesn’t mean you don’t have a right to have them, so find out what you actually are entitled to, and then push for that if you can.
The HHS.gov website also has good info on this, see here: https://www.hhs.gov/hipaa/for-individuals/faq/index.html.
I’m sorry to say that it’s pretty common to encounter problems trying to get records from previous providers, especially when one has accumulated a long and lengthy record. This is why I recommend people create their own personal health records as early as possible in life, and I think it’s great that you are trying to do this now.
There are some personal health record companies that will chase down your records on your behalf. This type of service does usually cost money, but it might save you some time and hassle.
Another option would be to consider a consultation with a doctor specialized in second opinions or in patient advocacy; such providers usually have experience retrieving records from others and as health providers, we usually aren’t charged the fees that individuals may get charged. A clinician will also be able to sort through your information and figure out what is most important to keep.
Good luck!
Thank you for your guidance, Leslie. I very much appreciate it. I’m currently caring for my 90 year old mom, who lives in an assisted living facility. I am responsible for advocating for her wellbeing on all levels, and tracking her care. It gets pretty overwhelming sometimes, and I appreciate your, and others, suggestions.
Best wishes,
Jenn
Hi Leslie,
I would like to help my niece get to the bottom of a years long back issue that is causing chronic pain. My instinct is to sit her down and start from the beginning, documenting dates, the initial issues, appointments, treatments good and bad, all visits, medications, etc. I think a small part of the problem is not having all the information in one spot. My instinct is to create a spreadsheet of some sort, and have all documents as attachments. Is there a better way? I feel like I am being an investigator at this stage.
Hard to say what is the exact best way, but in general, I think you are on the right track. For a persisting or significant problem, it can be extremely helpful to create a detailed timeline of what happened, what was tried, what was the result of that intervention, and so forth. Investigating and creating a useful summary is very important. It shouldn’t have to be the responsibility of the patient or family, but the truth is that many health providers won’t have time to do it, so good if you can.
You could certainly start with a spreadsheet, but eventually, for a doctor to read it, some kind of outline will probably be easier.
There is a free program online called Workflowy.com that makes it easy to outline and move things around.
You could also consider putting the supporting documents in something like Evernote or an online Google drive folder. The main advantage of this is that you will be able to search the pile of documents more easily, e.g. you could search “MRI spine”.
Last but not least, you might be able to find an online community of patients and families dealing with a similar problem. They might have good suggestions as to how to organize and maintain a timeline of the problem. good luck!
Thank you for all of the wonderful information you provide. If I’m making an appointment with a specialist or seeking a second opinion, is it more usual to send my medical records ahead of time or just bring them with me? Is this something that varies from doctor to doctor, whether they’ll look at someone’s record in advance of an appointment? Thank you.
Interesting question, thanks for posting it.
I think different providers and clinics vary, in terms of their processes and need for medical records ahead of time. Generally I think it’s a good idea to send them ahead of time, but that said, the clinician may not have had a chance to review them until right before your visit, or sometimes even right during your visit.
If you are able to send them ahead of time, I think it’s a good idea. You may also still want to bring along a copy, just in case what you sent ahead has been misplaced (this has been known to happen). If your goal is to get the most out of your visit, it’s a good idea to cover as many bases as possible.
A really great article, Leslie! I’ve poked around your site a bit and am very impressed! I immediately shared your article on what to have the doctor check after a fall with a caregiving group I’m a part of. Someone is always asking that question!
I’ll add to this conversation that I’ve had some great luck with CareZone for keeping notes and records. (I basically do my own version of chart notes in the app during all medical appointments.) It’s a great app that is secure and does exactly what I need. I started by using Cozi to keep a calendar and contacts but it’s not very secure and not really made for what we needed. In addition to the journal feature, I use in CareZone and the medication lists, I can keep all of their medical contacts there, a calendar of appointments, and I can give other family members access and send them requests for help, and do all that for more than one person in my care.
In addition, I am still going to use a binder for record keeping for more incidental documents that have been getting lost–mostly stuff from Medicare and the VA, as well as how-to’s on health and home care for other family members to refer to when I am not around. It’s kind of a LOT to put together and I imagine will need regular updating, but I think that it will be helpful when needed.
Anyway, thanks for the great article on this topic! I have so much appreciation for professionals like yourself who see how much help family caregivers need and are going the extra mile to provide expertise and assistance.
Thanks for sharing this feedback and especially for sharing your experience with CareZone! It’s so helpful for readers to hear from other real live family caregivers. Agree that CareZone has some nice features and know some other families who find it quite useful.
A physical binder is also quite helpful. That said, I’ve been quite glad to be able to search Evernote and Google drive when looking for something, so you might consider creating a digitized collection of documents and resources as well. Good luck and thanks for joining our community!
Is there a national database for medical records accessible by the medical and the insurance industry.
Some medical professionals will record incorrect information that needs to be checked and maybe corrected.
How does someone do this?
Good question, as the issue of errors in medical records is an important one.
I’m not aware of a national database of clinical records. Not sure what insurance companies can access, in terms of records from when someone was not insured by them.
I will see if any of my colleagues with more expertise in this can weigh in.
I have been a full-time caregiver for both my disabled elderly parents for over 10 years and have always maintained thorough folders or binders for their medical records much appreciated by the doctors we see. I carry the most current folder with me to medical appointments leaving older less important material at home in files. Over the course of those 10+ years, I have had to correct untold medical records in doctors’ offices or hospitals because of entry errors, transcription errors, etc. The quality of data entry staff skills has dramatically declined, and I see this as a potential danger to online medical record keeping for the future. On many occasions my notes have corrected the practitioners memory of what was discussed, procedures done, etc. It has been frightening the level of errors we’re run into. I see keeping all our medical information up-to-date and available as a real safety net in these times. Thank you for emphasizing the importance of these kinds of tools.
Thank you for sharing these insights. Great that you have been able to help your parents in this way, I’m sure it made a great difference.
Have you come across any new digital Personal Health Record applications / websites that you would recommend? Thanks.
I haven’t looked into available PHRs for a while now. I have heard that Healthvault is closing down. Please let me know if you come across anything interesting or useful!
I use carbonite to back up my hard drive and am able to access the files from my phone when at the doctor’s. I scan in results and store on my computer but am able to not only see the files from my phone, but can email directly from the Carbonite app on my phone. I also use TurboScan to scan the documents from wherever we are. It scans as a PDF (or JPG), I email to myself and then save on the computer when I am home.
I am a nurse and a patient. Recently, I had a 2h appointment with a specialist at Johns Hopkins. I was quite unprepared for the zillions of questions I was asked. I had brought a binder with me because I think that works best at appointments. But because there were so many questions, when I got home, I decided to renovate and reinvent my binder. I access electronic records at home and have linked the different medical facilities together however, all medical facilities do not use the same system. Also, sometimes I like to highlight something specific or group results together. The paper binder helps to keep me organized.
Good for you, Allison! It is a chore to get one’s paperwork in order but well worth the time investment in most cases. For some of us it’s a binder, for others an electronic tool. You highlight a common concern among health care consumers and providers, in that almost every institution has its own electronic medical record (EMR) system and they do not always talk to each other! I wish you well with your health issues and congratulate you for working so hard at self management and self care (which is what getting organized really is).