All family caregivers want their older loved ones to get the right medical care. But doctors are often lacking key medical information at the time they see your aging relative.
The solution: setting up and using a personal health record (PHR).
This is a big step up from what many families do, which is to create an “in-case-of-emergency” packet. Such medical information packets usually include a list of medications, chronic conditions, and allergies, along with the names of next-of-kin and perhaps a POLST form.
I’ve reviewed such medical information packets, and they are certainly better than nothing. But in general, they don’t help older adults avoid these very common — and potentially serious — problems with their medical care:
- Delays in treatment/action because test results aren’t available. Often doctors need test results in order to know how to proceed medically. If tests have been done but the results aren’t available, the doctor’s options are to fly blind, re-order the tests, or plan to request the test results and then see you again once the results are available.
- Getting worse care in the emergency room, or in urgent care. An urgent medical problem often means seeing new doctors. Those doctors have to offer help quickly, but if they are lacking detailed medical information, it’s generally harder for them to offer the right medical management.
- Suboptimal medication prescribing. Whenever medications are prescribed without first considering all other medications being taken, a senior’s health is being put at risk. Although bringing an up-to-date medication list (or better yet, all the medication bottles) is very helpful, it’s also valuable for doctors to understand why another doctor prescribed a medication.
- Suboptimal care from a new primary care provider (PCP). Adults in late life often move and have to establish care with a new PCP. Especially when a senior has multiple chronic conditions or a complicated health history, delays in getting medical information means it often takes the new PCP months to get up to speed so that he or she can properly help the older person with his or health concerns.
- Inadequate help from a specialist or consultant. Aging adults are often referred to specialists, but studies have found that specialists often don’t receive enough information to do their work. Again, at best this means delays and inconvenience for you; at worst this can lead to serious health problems if a senior gets the wrong care, or gets the needed care too late.
Fortunately, even a very basic and low-tech PHR can help your older loved one avoid the problems listed above.
At a minimum, you’ll save yourself hassle and the extra appointments that get scheduled because the doctor didn’t have the needed medical information the first time around. You’ll also spare your loved one the discomfort and expense of enduring duplicate testing.
More importantly, properly maintaining and using a personal health record (PHR) will go a long way to ensuring that your loved one gets better, safer medical care. It can also help you avoid potentially life-threatening medical mishaps.
The key is to learn what medical information to put into this PHR, and how to use it effectively for care coordination. This post will tell you what you need to know, to set up and use a PHR.
Note: This post assumes that that your older loved one or caree is ok with you accessing his or her health information. I’ll also be using the term “caree” below, as it’s a short and accurate way of referring to the person you’re helping.
How to Set up and Use a Personal Health Record
There are three key activities involved in maintaining and using a personal health record (PHR). They are:
- Obtaining copies of useful medical information in an ongoing way.
- Keeping the information in a personal health record.
- Sharing the information in this health record when your caree is seeing a healthcare provider.
Ideally, all of these activities are “ongoing” activities. Unless your older loved one is not regularly seeing doctors — which is unusual for those older adults with family caregivers — you’ll need to plan on doing these activities regularly.
This means you need to figure out a good routine and system, in order to make this a manageable caregiving task. This will take a little effort, but it will pay off because your caree will get better medical care.
Here are more specifics on how you can manage each activity:
1. Obtaining copies of useful medical information. It’s one thing to access your caree’s medical information, such as reviewing test results via the doctor’s online portal. This is a good start, and I certainly encourage everyone to try this.
But it’s another thing altogether to get a copy of your caree’s medical information.
The big difference is that when you have a copy of the information, you’re much better able to quickly share this information with another clinician, or otherwise use the information to improve your caree’s healthcare. (More on how to use this medical information below.)
It’s key, however, to make sure you get copies of the most useful types of medical information, namely, “doctor-level” information.
In other words, it’s not enough to keep those patient visit summaries that everyone now hands out. Instead, get copies of things like laboratory results, radiology reports, and doctors’ clinical notes.
I especially recommend older adults and their caregivers obtain the information that I listed in my last post, “10 Useful Types of Medical Information to Bring to a New Doctor.”
Now, I’ve noticed that people often make a push to obtain records when their older caree is switching to a new primary care doctor, or when there’s another “special event” at hand. This can certainly be a good time to start a PHR.
But a PHR will serve your caree better if you can make it a habit to keep obtaining records as you go along. After all, if there’s an emergency, or a new visit with a specialist, the involved doctors will want to review the most recent medical information.
How you keep the PHR up-to-date will depend on your options for actually getting the information. Common ways to get medical information include:
- Copying or downloading information from a patient portal. If the portal has “Blue Button” enabled, this can make the process easier. Bear in mind, however, that some electronic record systems do not include emergency room (ER) or hospital results in the data available via the patient portal. Be sure to get those ER records though; I find that ER records are usually chock-full of useful medical information!
- Asking the doctor for a copy of lab and radiology results right during a visit. Your doctor may also be able to print hospital and emergency room documents, if he or she has access to that medical records system.
- Filing a more formal request for information. This is often necessary to get medical information from larger institutions, such as hospitals. You can learn more about formally requesting medical records here.
I have more information on your right to request and access health information here: 10 Things to Know About HIPAA & Access to a Relative’s Health Information.
2. Keeping the information in a personal health record.
How you keep the information will depend on what type of personal health record you have.
The most basic low-technology approach is to keep paper copies in a binder, or a file folder. I’ve seen this work for many families, especially if there aren’t too many medical records to keep track of.
But for those older adults who see doctors often, or have been hospitalized, the volume of paper records can become overwhelming. (See this caregiver’s comment on one of my earlier posts.)
So in many cases, I recommend people consider some kind of digital solution, such as keeping copies of the information on a computer. There are also some special online services that are designed to help people store and manage medical information.
For more information on how you might keep information in a PHR, see the third section of this post, titled “Tools for Caregivers: Keeping and Organizing Medical Information.”
In this post, I list some specific features you should consider as you set up your personal health record. For instance, you should consider how easy it will be to search the information, and to share it with a doctor or another family member. I also list what I see as the main pros and cons of your main PHR options.
3. Share the information in this health record when your caree is seeing a healthcare provider.
As a practicing doctor, I can’t tell you how many times I’ve been seeing an older person and we’ve realized we’re in need of some item of medical information — usually lab results — from another doctor, or from the hospital. It’s also quite common for families to tell me their loved one went to the emergency room, but not be sure just what was diagnosed.
Although doctors and hospitals are getting better at exchanging medical information, it’s still a very spotty process.
So one of the best things a family can do, when it comes to better health for an older person, is be ready to provide clinicians with medical information from other clinicians’ offices.
Here’s an example: your older loved has seen a cardiologist in the past, but now you’re bringing him to see a lung specialist, because he has chronic obstructive pulmonary disease (COPD) and has been short of breath. (Smoking tends to cause both heart problems and lung problems in older adults.)
The lung doctor will likely be very glad to review the results of cardiac testing — such as an echocardiogram — at your initial visit. That’s because part of the lung doctor’s work is to help your loved one figure out how much of his shortness of breath is due to COPD, versus coronary artery disease or another form of heart problem.
But shouldn’t the specialist already have received the relevant medical information, perhaps from the primary care provider? Well, in principle yes, but studies have found that the needed medical information often doesn’t get transferred to the specialist.
If you maintain a PHR for your caree, you won’t need to depend on the healthcare system’s faulty methods of transferring medical information. That means better healthcare for your caree, and probably less hassle and repeat visits for you both.
And it’s definitely a big plus if you can give a doctor medical information right during a visit, when the doctor is thinking about your older caree’s health. This also means that you can ask questions about the information, and more actively participate in discussing the medical situation and care plan.
Using a Personal Health Record to Do Your Own Health Research
In this post, I’ve focused mainly on how you can use a PHR to make sure your caree’s healthcare providers have the information they need, to better help your caree and you.
But of course, some families use the medical information to go and do their own online research into a loved one’s health problems.
This can be worthwhile, since learning more about a certain condition or problem can help you identify additional medical options that the doctors may not have mentioned. It’s also possible for doctors to make mistakes or miss a diagnosis; doing a little research online can help double-check an older person’s care.
Using the internet, online patient communities, and other resources to learn more about a health problem is part of being an educated and empowered patient, or “e-patient.” If you’re helping an older person with health issues, then you can become an “e-caregiver.” In fact, reading this blog post means you are becoming better educated and better empowered to help an older person with health issues 🙂
That said, it’s easy to get overwhelmed by the volume of health information online.
So if you are a busy caregiver, I’d say start by collecting your caree’s health information in a PHR, and focus initially on making the information available to other health professionals.
With the tools available today, maintaining a PHR can be fairly straight-forward, and using it will improve your loved one’s healthcare and care coordination.
Do you have any questions about setting up or using a personal health record (PHR) for an aging adult? Have you had any experience managing an older person’s health information?
If so, I’d love to hear from you in the comments below.