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
Lisa M Cozart says
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.
Leslie Kernisan, MD MPH says
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!
Jenn says
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
Taylor Kendrick says
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
Leslie Kernisan, MD MPH says
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!
Lousnne says
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?
Leslie Kernisan, MD MPH says
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!
AJ says
Nice info. I will keep in mind. Thanks for share.
John Grimes says
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!
Leslie Kernisan, MD MPH says
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.
Mary Wilson says
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.
Leslie Kernisan, MD MPH says
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.
Kathleen says
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
Leslie Kernisan, MD MPH says
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“
AspenCare says
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.
Charlie Kimball says
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.
Leslie Kernisan, MD MPH says
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.
Steve W says
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.
Leslie Kernisan, MD MPH says
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.