Tools for caregivers: Keeping & Organizing Medical Information

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.
• 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.
• 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