A friend called me the other day: he is moving his 93 year old father from New England to the Bay Area.
This is, of course, a relatively common scenario: aging adult moves — or is moved by family — to a new place to live.
Seamless transition to new medical providers ensues. As does optimal management of chronic health issues. Not.
Naturally, my friend is anxious to ensure that his father gets properly set up with medical care here. His dad doesn’t have dementia, but does have significant heart problems.
My friend also knows that the older a person gets, the more likely that he or she will benefit from the geriatrics approach and knowledge base. So he’s asked me to do a consultation on his father. For instance, he wants to make sure the medications are all ok for a man of his father’s age and condition.
Last but not least, my friend knows that healthcare is often flawed and imperfect. So he sees this transition as an opportunity to have his father’s health — and medical management plan — reviewed and refreshed.
This last request is not strictly speaking a geriatrics issue. This is just a smart proactive patient technique: to periodically reassess an overall medical care plan, and consider getting the input of new doctors while you do this. (Your usual doctors may or may not be able to rethink what they’ve been doing.) But of course, if you are a 93 year old patient — or the proxy for an older adult — it’s sensible to see if a geriatrician can offer you this review.
Hence my friend’s situation illustrates two common core healthcare needs that families of older adults often have:
- To successfully manage a transition to a new team of medical providers.
- To obtain a second opinion regarding a person’s health, chronic conditions, and the medical management plan. (For more on how this approach can can help patient assess the quality of their outpatient care, see this post.)
To address both of these needs, older adults and family caregivers need a good personal health record (PHR).
So, I find myself — yet again — on the hunt for a good PHR system to recommend to families.
As some might recall, I blogged about PHRs back in January. (See this post.)
And now the time has come for me to take another look at what’s out there for PHRs. Let’s see what people can recommend for these two family caregiver use cases.
Two use cases for personal health records
I have two particular use cases in mind. One is based on my friend’s situation, which I described above, and the other is based on a comment that was recently posted over at Geriatrics for Caregivers.
Use Case #1: The family of an older adult with multiple chronic problems has not been collecting substantial health information. (As in, copies of the health information that doctors look at; I’m not talking about those patient visit summaries, which I find are barely of use.) The family is moving the aging parent across the country, and are requesting a comprehensive consultation.
Persnickety doctor (yours truly) sends them her list of medical information that they should bring to the first visit. Family needs to:
- Obtain this information, much of which is currently in the hands of prior providers,
- Organize it and keep it in a way that will facilitate care in the future,
- Keep adding medical information to their repository in the future, in part because Dr. Kernisan has insisted that this will pay off for future healthcare needs.
Use Case #2: I am just going to paste the relevant comment right here, as I find it fascinating. Of note, in the related Geriatrics for Caregivers blog post, titled “Tools for Caregivers: Keeping & Organizing Medical Information,” I listed a number of digital options for managing health information. However, the reader still felt a need to request additional advice. (The moral of the story: family caregivers will likely be asking doctors and others for advice. I assume this is because sorting through a lot of options on your own is tiring; that’s why people ask experts instead of figuring it all out on their own via Google.)
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.
So to summarize this use case: an adult-child caregiver has been maintaining a personal health record on paper. She has decided that it’s in her mother’s interest for her to serve as health information exchange system. (Smart!) Her notebook is getting big and cumbersome, so she’d like to convert it to a digital repository. She finds providers are often interested in health information — including test results — from other providers.
She needs to:
- Convert her existing paper resources into a digital format,
- Easily share content from the PHR with her mother’s various doctors,
- Keep adding information to the PHR as her mother continues to see various providers.
What personal health record systems can you recommend?
I have a few PHR ideas for these two use cases, but I haven’t had time to research in depth since last January’s PHR post. So I am soliciting suggestions and recommendations from you, dear readers.
You may want to take a look at my recently posted list of 10 Useful Types of Medical Information to Bring to a New Doctor. This may not be what consumers initially think of when they try a PHR, but this is what I want to see at that first visit, and I believe the information would be of use to most doctors.
If you have suggestions for a PHR system that would work for these use cases, please share below. Bonus points if you have actually tried these as a user, and for a patient who has multiple chronic conditions. Thanks!
Note: If you post a comment and you have a relationship to a product you mention, please disclose.
About 3 months ago my grandmother in Iowa was diagnosed with terminal cancer. My mom (adult-child caregiver) created an account for herself and my grandmother on CareTree. She then invited her siblings and other pertinent people to access grandma’s health record.
There is a documents feature where they’ve been uploading every document they get. This includes everything from medication lists to the nursing home’s cable channel lineup.
There is a contacts section where they have all of the doctors listed, so they have quick access to everyone’s phone number.
There is a calendar that they’re using to coordinate who is staying with grandma and when doctors’ appointments are.
There is a medications section that has all of her medications listed. My cousin, a pharmacist, regularly goes through this to make sure everything is in good order.
There is also an EMR tool that allows them to connect grandma’s EMR patient portals from her doctor and her hospital. That way my sister, a doctor in Connecticut, can login to the medical record, read the lab results as they become available, and explain them to the rest of the family. In your situation, the family could have invited you in to do the same things. It also gives everyone access to all the information from previous providers.
There is also an activity feed that is tied into text message and email alerts. Whenever there is an appointment, they put the information into the activity feed and everyone connected to grandma gets an alert. If it’s medical, we have to login to CareTree to read it. If it’s non-medical, then it gives me the message.
This doesn’t have EVERY feature that you’ve listed that you want in a PHR, but it seems to me that it is the best step towards it.
Thanks for this comment. Well, you are the founder of CareTree, so not surprising you like this product.
That said, it sounds promising, so I'll keep it in mind. I especially like that your family is using it, and that your doctor sister is explaining things to your family…sounds similar to my consultative work 🙂