Designing for Caregivers

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?

Leslie Kernisan, MD, MPH, has been practicing geriatrics since 2006, and is board-certified in Internal Medicine and in Geriatric Medicine. She blogs at GeriTech.

13 replies »

  1. Truly when someone doesn’t be aware of then its up to other users that
    they will help, so here it takes place.

  2. As a full-time daughter/caregiver of two over-80 elderly, I am faced with the exact situations you describe. I have multiple styles of medication charts depending upon who needs it, but one two-page medication-by-time chart for my father that includes the usual timing and dosages of his 15-25 medications and supplements, but I also must include the brand/generic and foreign names for the medications as we live 4 months in Ireland. I also include on my chart info on the shape of, color of and imprints on the medications for easy identification should I not be around, as well as any particular parameters, such as blood pressure, for dosing. Whew! This gets complicated! Then I’m asked to complete for every new doctor visit a 3-4 page history form for their charts which no one seems to read since I’m asked the very same questions by the doctor or assistants when we enter the exam room! I desperately need an online method of easily recording all this data that I then can use to forward to new providers and print for our own uses. Ease of input and update is crucial, as I have neither the time nor energy for anything else. Would love the pharmacy input of prescription data, in our case Costco pharmacy. Have been trying to sign up for HealthVault but have had ongoing problems in adding my parents instead of being booted off the site. Sigh! Please continue your great efforts in encouraging streamlining of such health info management sites with an eye to the increasing number of caregivers! We really need the help1

  3. Sean…It has been a while since I signed on….but it was kind of a bummer. At the time I had to enter a complete profile (more than most people would have at hand) to be able to complete the sign up.

    Maybe the emergency profile fixes that.

    I’ll add that lots of us are working on apps that will need a consumer version of EHRs….and HealthVault is a likely candidate….but it is just too hard to use. We’re all hoping something better comes along.

  4. HI Leslie,

    HealthVault is far from perfect, but it does overcome some of the problems you identify.

    HealthVault has, what appear to be APIs or apps from Walgreens, CVS and other major pharmacies that auto-infill prescriptions to patient records.

    If you didn’t find ’em it is a safe bet that others miss these too. And, it is a little advanced for the sick or elderly to know that apps can add functionality to the HealthVault platform….but the capabilities are there.

    Nice writing!

    Thanks. Scott

  5. hi Sean,
    Thanks for your comment and interest in my feedback.

    I completely agree that manual entry should be the option of last resort, so look forward to other options becoming the default.

    Emergency profile is a great concept; caregivers of elders often have to bring the older person to the ER and I often urge them to have medication list and summary on hand for just this purpose. Still need an easy way to get meds in there though! I keep waiting for someone to make it possible to do via smartphone taking pictures (the providers need to know what the patient is taking, not just what has been prescribed), but not yet possible…

    In general, 90% of the time when I’ve looked at the med list a caregiver gives me (mostly written, sometimes typed, sometimes in apps), it is out of date. Esp with elders who take a lot of meds, see a lot of providers, and constantly are experiencing changes in the med list, maintaining an up-to-date list is very very tough for patients and families…

    but I expect technology to make this easier eventually 🙂

  6. Leslie, thank you for this great post — and completely understand your frustration at not finding the UX you hope for, at HealthVault or elsewhere. Just two thoughts to add:

    First — I know our UX team will really appreciate the feedback and I’ve sent it along their way. No excuses, if we’re not making the grade then we’ll do better. I’d also be really interested in your impression of signing up for HealthVault via our “emergency profile” workflow at http://healthvault.com/eprofile … the approach here is to get your basic data entered as simply as possible. If you find it better, that’d be good data for us as we think about that more generic “getting started” case.

    But also — I want to share a premise behind HealthVault that I really believe — which is that *any* kind of manual entry is the wrong long-term solution. We believe that for PHRs to be adopted and used widely, they have to be kept up to date automatically. For example, if you use CVS to fill medications, that can connect to HealthVault and update your record each time you visit. Or if you get a Blue Button file or other visit summary from your providers, that gets included too.

    That’s not a justification for missing the mark on UX, but hopefully it spurs some additional thoughts … because a fully-connected ecosystem is the only way I believe we’ll really crack the nut.


  7. thanks all for these comments.

    Shirie, agree that it’s extremely useful as a clinician to find out what prescriptions have been ordered vs picked up, and who the other prescribers are. Patients need this info too…

  8. Great ideas. I especially like the one about getting a pharmacy app that can import data from the local CVS. You’d not only get the information, but you’d find out what prescriptions the patient had actually filled and taken.

  9. Leslie,

    In response to this excellent post, I offer up a new PHR called GoPHR (www.gophrit.com). What GoPHR allows is an authorization function for patient approved healthcare professionals to import information directly into a patient’s account. We designed this interface for physician access, (using the NPI number and some other authorizing protocols) but it could also be used by pharmacists, as well. GoPHR is a non-thethered PHR, very inexpensive and easy to use. Go to our website and sign up for a free account. I think you’ll like what you see.

    We created GoPHR to remedy some of the deficiencies of Healthvault and before it, Google health. Please try it out and tell me what you think.

    Tom Wiggin

  10. We need drug lists to display in parenthesis the generic name for patent names. And vice versus, the patent name in parenthesis for generic names. There’s a lot of confusion going on when patent names are no longer covered by Medicare plans and generics have to be used.

    The drug list should immediately state the primary purpose of the medicine. Then list the alternative uses.

    The list should be separated between prescribed Routine and prescribed as needed (PRN).

    The list should show the times the medicines should be taken.

    Side effects should be displayed in a short sentence.

    Contraindications between medicines should display an alert. The alert should include the severity between individual medicines and a list of medicines for each severity type alert. Alert types would be Major, Moderate, Minor. Doctors take insufficient time to diagnose patients and certainly spend no time in checking drug contraindications. It’s up to patients and caregivers to check this very important part of the total healthcare. Do not be afraid to question your doctor. If your doctor does not answer your questions or tries to browbeat you, report the doctor to the medical board and change doctors.

    I’ve found that drungs.com attempts to help in this need but is woefully deficient in the overall goal.

  11. Insightful points, especially that family caregivers will be “proxies” for the health care of the elderly and multi-conditioned patients. Patient engagement initiatives will ultimately stall for 3/4 of patients in medical homes and ACOs without proactively engaging the caregiver in the care management process from the outset.

  12. With the ever increasing challenges facing our health care industry why aren’t more Physicians actively demanding that we start a crash program to at least study and research the potential and possibilities of Medical Marijuana. We are already at least 30 years behind where we could have been, and centuries behind where we were; let’s not forget that we also had doctors before we had MD’s and PhD’s. Just my 2c.
    Patrick Monk.RN. Hospice Home Visit Case Manager.