GeriTech

In Search of Technology that Improves Geriatric Care

aging

Designing for Caregivers of Elders

[This post was first published on The Health Care Blog on 5/25/13. See the comments for a short response from Microsoft Healthvault’s Sean Nolan. (Thanks Sean!)]

What user personas do healthcare technology designers and entrepreneurs have in mind as they create their products? And how often is it the family caregiver of an elderly person?
This is the question I found myself mulling over as I wandered around the Health Refactored conference recently, surrounded by developers, designers, and entrepreneurs.
The issue particularly popped into my head when I decided to try Microsoft Healthvault after listening to Microsoft’s Sean Nolan give a very good keynote on the perils of pilots and the praises of platforms (such as HealthVault).
As some know, I’ve been in search of apps and services that can help older adults and their families keep track of lengthy and frequently-changing medication lists. For years now I’ve been urging family caregivers to maintain some kind of online list of medications, but so far I haven’t found a specific app or service to recommend.
Why? Because they all require way too much effort to enter long medication lists. Which means they are hardly usable for my patients’ families.
Could HealthVault do better? Having heard generally promising things about the service these past several months, I signed up and decided to pretend I was the daughter of one of my elderly patients, who had finally decided to take Dr. Kernisan’s advice and find some online way to keep track of Mom’s 15 medications.
Sigh. It’s nice and easy to sign up for HealthVault. However, it’s not so easy to add 15 medications into the system. When I click the “+” sign next to current medications, I am offered a pop-up box with several fields to complete.
I can’t help but think that when HealthVault’s UX team worked on this, they must not have considered the case of the 58 year old woman trying to enter the lengthy med list for her 85 year old mother.
This is too bad, because if they had considered the caregiver of an older adult, they surely could’ve come up with some better options. For example, consider what happens when one signs up for a new social media platform these days. Usually, the service offers to connect to one’s email account or contact list to conveniently import useful information.
Similarly, if HealthVault had designed with lengthy medication lists in mind, they might have immediately offered the option to import medications from one of their major pharmacy partners, like CVS or Walgreens. (Oh wait. Looks like Walgreens and HealthVault broke up recently. Bummer.)
Unfortunately, as far as I can tell, most companies don’t seem to have considered usability with the needs of an older medically complex patient in mind, unless they are specifically focused on the aging/caregiving market. (And even then, I’m not always sure the design can stand up to the medical complexity of these patients.)

How to help healthcare tech companies design for the older medically complex patient

The number one health services problem facing the nation is how to provide compassionate effective healthcare to the growing Medicare population, at a cost we can sustain.
Healthcare technologies companies often gravitate towards wellness, prevention, and serving a relatively young, tech-savvy population. But if they really want to serve the needs of society, they need to help those patients who are the chronic high utilizers: the elderly.
How to design for these older patients, and the family caregivers who are often their proxies in healthcare?
Developers and designers would need to start by better understanding how usable their product feels when used on behalf of someone with multiple conditions and multiple medications.
(Of course, in an ideal world the product would be designed to be usable by the elderly themselves, but let’s start with the simpler scenario – and currently relatively common scenario – in which young and middle-aged adults use healthcare technology on behalf of an older loved one.)
Here are three things that designers of healthcare tech tools should do:
  • Create a “family caregiver for a medically complex older adult” user persona. In my experience, family caregivers are pretty stressed and overwhelmed by the substantial job of managing an older person’s healthcare. They need help, and that help needs to be easy to use. Hence, I’d be surprised to see them adopt any product that requires labor-intensive data entry.
  • Involve caregivers of medically complex elders in the user testing of your product. See what happens when caregivers try to use the product on behalf of an elderly person.
Of the three ideas above, the second will probably be the most difficult for companies to implement. That’s because a realistic sample data set for a medically complex patient is hard to generate from scratch.
One possible way to tackle this would be for some larger entity governmental or non-profit entity to create this, and then distribute to designers and developers so as to help them serve this critical user demographic.
Can anyone think of a way to encourage medically complex patients to volunteer their de-identified data?
Other ideas on how to encourage developers and designers to create products that work for the caregivers of the elderly?

Will Activity Sensors in the Home Help Mom?

Lots of people are worried about aging parents who live at home, often alone. Could activity sensors in the home help?

Patients’ families have occasionally asked me about home sensors in the past, but I’m guessing this question will become much more common. After all, sensor technology is becoming much more affordable and easily available. And of course, many people want to help older adults remain safely in their homes. So there seems to be a market out there, and yesterday evening, at an Aging 2.0 event, I heard brief presentations by two companies developing home-based activity sensors targeting the aging market: Lively and Evermind.

With both services, sensors provide passive monitoring of an older person’s activity. Evermind uses sensors that are plugged into commonly used appliances. These track use of the appliances, and presumably would generate alerts if the use pattern were to change. Lively uses motion sensors in the home, which relay information to a nicely designed small base station with a cellular connection.

Both products seem to require minimal set-up or alteration to a person’s living environment. Evermind is still in development, so pricing and details are TBA. Lively is launching this summer, and will cost $149 for the equipment, plus a monthly subscription fee of $19.95. (Along with the passive activity monitoring, Lively’s service includes postal delivery of Livelygrams, which allow families to share news and pictures with their older loved ones.)

So, if you have an aging parent living home alone, should you get one of these activity monitors? Will it help?

The answer, of course, depends on how you define help, and just what problem you are hoping to solve.

What problems will activity monitors help solve?

As far as I can tell, these types of activity monitors mainly address the following problems:

  • Families feeling anxious about how an older person is doing. 
    • Activity monitors will let families know if the person is not moving around the home — or using applicances — as usual.
  • Older adults don’t like having to frequently tell their families that they are ok, or mind calls to check on how they are doing.
    • If activity monitors can be relied on to flag a change in status, then phone conversations can instead focus on telling stories, or other conversations that don’t highlight anyone’s anxieties about aging, safety, and possible decline/disability.

It’s also possible that these devices might help older adults feel more secure, knowing that someone will be alerted if they significantly change their activity pattern.

Is there clinical data on how activity sensors in the home actually affect outcomes and quality of life? I took a quick look in the literature and did not find much on outcomes, although I did come across this nice article in The Gerontologist which reviews some issues that clinicians should consider when advising families re smart home technologies. (The author mentions assisting with information gathering, ensuring comprehension, and ensuring voluntariness.)

Back to the original question: will activity sensors in the home be helpful to older adults as they age? Hard to say. The idea of smart homes and connected independence is compelling. And there is something to be said for products that provide some peace of mind.

But presumably everyone is also assuming that when these monitors flag a change in activity, someone, somehow, will intervene in such a way that allows the older person to live a better and more independent life.
In other words, along with reassurance, it seems to me that these products are implying greater safety for our older loved ones. (Kind of the way that those infant sleep monitors imply reduced risk of SIDS when in fact there is no evidence to support this.)

Here, I have to say that I’m a bit skeptical, and if a family asked me for ways to help keep their older loved one safer at home, I might first suggest things like assistance with medication (so many elders are on unnecessary and dangerous medications! and so many elders need to take certain medications daily in order to feel their best), optimizing physical function, reducing fall risk, social activities, and arranging for proper support of ADLs and IADLs. Come to think of it, if you want to monitor activity, why not wire up a medication dispenser, so that you can follow the activity pattern while still helping an older person and her clinical team manage the medication plan?

Bottom line: If an activity monitor isn’t too expensive, it seems reasonable to give it a try and see if it feels helpful. Family caregivers are often quite anxious to know how a loved one is doing, and anything that helps them cope with worry and the other challenges of caregiving should be taken seriously. However, I hope families won’t have overly inflated expectations of safety benefits, unless research demonstrates that outcomes other than anxiety are improved.