In search of a good caregiver support app

A friend invited me to his Carezone account recently, and I have a few thoughts to share.

For those not familiar with this product: it’s a web and app-based platform meant to help family caregivers stay “organized and effective.” It does offer encryption and privacy features, as it’s intended for a person’s care circle to be able to share potentially sensitive information such as medication lists, journal entries, and caregiving to-dos. (See some NYT coverage here; not clear that the reporter spoke to any caregivers or clincians but maybe that’s because it’s in the digital business section.)

Is it meant to share information with clinicians? As far as I can tell, no. There is nothing about sharing with a doctor on the website, and within Carezone, it seems you can only invite people as “helpers.”

So how did I end up in Carezone? Well, in general I often try things out pretending I’m a family caregiver, because I like to see what families might be experiencing in terms of user interface and options. So I’d signed in to Carezone several weeks ago, when a colleague mentioned recommending it to clients.

But in this case, I was invited to another person’s Carezone account because my friend wanted a few suggestions regarding the care of his elderly mother. To view the Carezone information, I had to create a login (my email) and password.

Hence I entered Carezone as a friend — or “helper,” per Carezone — but it’s not hard to imagine patients and families inviting their actual doctors to something like Carezone. After all, some patients currently come to the doctor with notebooks and file folders, so if they are now going to use an app to keep track of things, they will surely try to share this with doctors.

Here’s what I found: sections titled Journal, Calendar, Medications, To-Dos, Contacts, Notes, Uploaded Files, and Profile.

Looking for medical information, I started with the medications, which I find is usually the best-available proxy for a medical problem list when looking at a caregiver’s notes. Medications are presented in a list, with columns for “What it’s for” (which I like) and “Rx number” (really?) and “Where you get it.”

Next I skimmed the journal entries, which is where my friend has been keeping notes on what the doctors tell him; they are blog-like, in that they are time-stamped and go backwards in time.

And that was pretty much all there was to see. Was it helpful to me? So-so. We had a phone call and discovered that one of his mother’s key medications was not on the list. Oops, someone in the family had forgotten to enter it.

A few days later, I get an email from Carezone, with an updated journal entry. It occurs to me that PCPs are certainly going to think twice about these products if they end up getting cc’ed on everything that a family says to each other. I sign back into the service, and find some options in the settings to *not* get emailed every time there is an update.

What I think of Carezone so far

Many caregivers need help keeping track of their caregiving responsibilities, and need help coordinating with a circle of concerned families and friends. So there is definitely a need for this kind of app.

What I liked:

• User interface seems pleasant enough
• Medication list includes a column for “What it’s for” 
• System suggests full medication names as one starts to type them in
• Browser interface, which makes easier to enter information compared to smartphone

What needs improvement:

• Entering medications seems onerous: multiple fields to type into (name, dose, how many times a day, who prescribed it, where did you get it, etc.). 
• Features seem very basic:
• Task list: you can assign a task to another helper on the case, but otherwise no
  due dates, no categories, just whatever you’ve put in the text box. If you’ve used anything more robust in the past, this feels a little anemic.
• Calendar: doesn’t automatically understand the time something starts based on the text entry (if you’re a Google calendar user, this is annoying). Also doesn’t offer option to send calendar item to an outside Calendar like iCal or Google.
• Doesn’t pull in info from other systems, such as pharmacy systems.
• Doesn’t seem to offer any option to print things out, or export. For instance, no way to print medication list, other than to print from the browser.

Bottom line: Requires labor to enter data, features pretty basic, doesn’t seem designed to interface with clinicians (nevermind two-way communication; this doesn’t emphasize printing things to show the doctor), doesn’t seem designed to support medical management. Seems ok if a family wants to collectively blog about how an elderly relative is doing.

Can caregiving apps work without being designed for medical management?

This is perhaps my bias because I’m a physician, but I can’t help but think that these caregiver organization apps will be doomed to fail unless they can more robustly incorporate medical information and the medical care plan.

I say this because a very substantial part of what caregivers of older adults must do is manage medical issues. This includes things like:

• Help an older person take scheduled medications. Big bonus if caregiver can snap a picture of the med and record it as taken.
• Monitor symptoms and events, such as pain, falls, incontinence, confusion, shortness of breath, etc
• Offer and track as needed medications, such as short-acting inhalers for COPD, pain medication for arthritis, heartburn medication, etc. 
• This is really important to me. I usually have a lot of difficulty figuring out how much of an as-needed medication has been taken.
• Implement non-pharmacological aspects of a medical care plan, such as timed toileting for incontinence, or a home exercise plan
• Keep track of appointments and all the involved providers
• Be prepared to provide an accurate medication list and health summary to medical providers. These providers might be entirely new, such as in urgent care or the ED, or might be regular providers, such as one of many specialists. (It’s not fair and right that patients need to handle this information exchange, but families need to be ready to do it, until we develop our perfect system of health information exchange.)
• Take notes during a medical visit, to help an older person keep track of what the clinicians said, did, and recommended. (Again, not fair that this falls on patients, but currently important.)

In the end, I would think that caregivers might be better served by organizational apps which are extensions of personal health records, rather than free-standing apps stemming from a private social networking model.

Of course for this to work, the personal health record itself has to be properly designed to support the care of medically complex older adults — you’d think the entrepreneurs are planning for healthcare’s power users (aka Medicare beneficiaries) but as far as I can tell they often don’t.

This means a personal health record supports medical complexity, care coordination among multiple providers at different sites, and supports the involvement of family caregivers and paid caregivers. Such a record should also be able to inhale information electronically from various sources, rather than expect families to diligently type everything in themselves.

Can anyone recommend such a personal health record to me? Or a caregiver support app that helps with any of the above?

Summing it up

Caregivers sorely need tech tools to help them keep track of caregiving tasks, and help share this work with a person’s care circle.

I personally feel that caregiving apps need to be better designed to help caregivers manage the medical issues. Most older adults who need help from family and friends have multiple chronic conditions, and can have a fair amount of home medical management to address.

To date, the caregiver support apps that I’ve come across require labor-intensive data entry on the part of caregivers, and don’t seem designed to support the many medical tasks that caregivers often find themselves responsible for.

It’s possible that in the end, the better caregiver apps will develop as extensions of good personal health records, rather than as private micro social networking apps.

Addendum 2/27/13: I’ve received a tweet from Carezone and they DO support printing, however has to be done by using the browser’s print. See here for more info. I tried it out for a med list and it did look pretty good; I do think they should add a print icon to the interface though.]