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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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
JEANNE CRONIN says
I and an elder friend use the same general teaching hospital in Boston MA. All hospital records on found of the patient portal. I have given up keeping track of test results, office visits, and etc. because I can access these records at any time. I travel with elder friend’s list of meds, ever growing and ever changing, and keep home laptop always available to fact checking appointments, tests, pertinent and particular details. Works for us,
Nicole Didyk, MD says
Thanks for sharing your experience, Jeanne! It sounds like the patient portal is an excellent tool for keeping track of your medical records.
When I go to a medical appointment, the doctor is typing on a laptop for most of the appointment. .When I get the the appointment summary it says something like he has a cold and prescribed a medications. The form has vitals, medications, history of conditions, allergies, etc Some doctors do a similar appointment summary but they include office notes with details. Should I request a copy of both. Don’t know how doctors feel about giving a patient copy of their office notes.
Nicole Didyk, MD says
Although the medical office notes contain information about you, the actual document belongs to the physician, and most of them will share that information, with a few conditions. Some physicians like to be present at all times when the patient views their file, others are happy to share notes without being present.
I can understand being curious about what is in the notes, but it may lead to unnecessary questions or concerns. If there is specific information that you feel you’re not getting from the summary, I would ask for that info and see what your provider suggests.
Dr.Kernisan: You have written excellent articles. Thank you for educating seniors about medicine. I have 11doctors and tons of paperwork that needs organization. Should I have a folder on each doctor with labs. tests, etc. ordered by that doctor or files of labs, cardiology, pathology, etc. plus folders on individual doctors. I read an article that said it was part 3 of a 4 part series. Where can find parts, 1, 2 and 4. Also, how long should you keep medical records? Thanks for your help.
Nicole Didyk, MD says
I’m glad you found these articles of use!
Here’s a link to Part 1: Tools for Caregivers – how journals can help, and Part 2: The portable and up-to-date medication list. Part 4: How to manage tasks and to-dos can be found at this link.
You might want to consider organizing your information by type of document (e.g. test, consult notes, medication lists and so on). You might be able to develop a cross-referencing system, such as coloured tabs, that can identify which provider is responsible for which piece of data. I suggest that because other providers might want to see information from the other doctors and keeping them separate might lead to duplication of tests or referrals.
Good luck with getting organized and I hope the other articles are helpful.