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 an Aging Adult’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 (PHR) online. These are websites designed to store health information from different providers. Some have apps to allow mobile access to the information.
- Available PHR sites and apps tend to change over time. (This is probably because the companies creating them are still trying to find a viable business model.) Search for “personal health record” online to see what might be available to you.
- 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. Some 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.
- The company might be using your data for marketing-related purposes.
- Personal health record companies can go out of business; although you should then be able to export your data, you might find the export is not easy to look through or review.
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?
To learn more, 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
Sadé Tolani says
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
Craig Maxey says
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.
Leslie Kernisan, MD MPH says
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…
Nancy S. says
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?
Leslie Kernisan, MD MPH says
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.
Joni says
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.
Leslie Kernisan, MD MPH says
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.
Erica G. says
Hey Christian I found a blank fillable durable power of attorney for healthcare form here:http://pdf.ac/51BlXu
Christian Go says
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?
Leslie Kernisan, MD MPH says
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.
Anna Lau says
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.
Leslie Kernisan, MD MPH says
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.
Jenny says
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.
Leslie Kernisan, MD MPH says
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.
Gloria says
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.
Leslie Kernisan, MD MPH says
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.
Karen says
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.
Leslie Kernisan, MD MPH says
Thanks for sharing these excellent suggestions!
e says
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!
Shannon Weiss says
Thanks for sharing !
Mary Hulme says
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!