Have I gotten to the end of the beginning in developing tools that help people take care of themselves?

With the recent release of Unfrazzle, an app for caregivers, I believe I have. Unfrazzle builds upon the learnings of Zume Life and Tonic, earlier apps I developed. There were key lessons from hundreds of users and family caregivers that influenced Unfrazzle’s product design, driving it in directions very different from and hopefully much more useful than what you might expect.

These key lessons, explored in more detail below, I group into three themes:

  • Care regimens constantly vary, and so tools must accommodate such variation
  • We live in a network of mutual caregiving, and simple notions of “the patient” or “caregiver–care recipient” match few people’s reality
  • Living, yes living, is much more important than adherence
  • For those unfamiliar with Unfrazzle, here’s a brief description:It is an iPhone app (Android coming soon) that helps users remember and keep track of anything they do to take care of themselves and their family (parents, friends, children, pets), and to stay in-sync with other caregivers in their family. Unfrazzle is a Design-It-Yourself app — it essentially provides a platform, a framework that the user then shapes to meet his own ever-changing needs.

    If that sounds clear as mud, try this: take your favorite pill reminder app, and imagine that you can change all the screens and forms to accommodate any health & wellness activity (not just pills but also other things such as exercises, moods, symptoms, observations, and chores). Then imagine that you can share any of your data with others also using the app, so that you can see each other’s entries. Imagine you can even allow others to make entries for you, then you’ve got the gist of Unfrazzle.

    Care Regimens Constantly Vary

    From the start,  beginning with Zume Life, our focus has been on making it easier for people to remember and track their health regimens. We began by targeting a simple, logistical problem — in our busy lives it is easy to forget little details.

    Our idea was that adherence would be improved if we had a memory aid.

    Our tool had to be somewhat flexible, because we took the approach that we could not possibly know everything a person might be doing for his health. For example, allowing a person to include their supplements in their list of medications, and not just their prescriptions.

    We appreciated what Sir William Osler once said, “you can have lice and fleas at the same time.” We decided to focus on health activities in general rather than the specifics of a condition such as asthma or diabetes.  We had categories: medications, biometrics, observations, exercise and diet. And we designed appropriate user interfaces for each.

    Alas, we immediately learned from our users that things did not always fit nicely into categories. Where exactly does one put “breathing exercise”? Is it a medication? An exercise?

    Is the ability to comfortably hold your breath for thirty seconds a biometric? Or  is it an observation? Eventually we started to wonder why things needed to be assigned to a category anyway.

    Also, we very surprised to see what people included in their health activities.  The most shocking was  ”Shoveling manure”  included in one early user’s regimen. We told the user that if this was an editorial comment on the value of our product, she didn’t need to continue with the pilot. But, it turned out, she lives on a farm where cleaning out the horse stables is very hard work. Very reasonably, she was keeping track of manure shoveling as part of her exercise regimen!

    We’ve come to learn that the range of care activities varies widely from the mundane, drinking herbal tea, to the fantastic, scheduled calls with faith-healers. We learned that accommodating such variety is a must, as hardly anyone had a simple “standard” regimen. Our experience matches what an anthropologist from San Jose State, J.A. English-Lueck documents in her book “Being and Well-Being: Health and the Working Bodies of Silicon Valley”. She terms it “deep medical diversity”.

    For the very first Zume Life pilot we were inputting user’s regimens ourselves, which of course proved untenable.

    All of our early users had chronic health issues, but we quickly came to learn that “chronic” does not mean “stable”. Things come and go, medications and regimens change. The chronically ill are also not excused from common problems — they can still twist their ankles and have to take care of that as well.

    The constant user changes were a hassle for us to keep up with, and users quite reasonably asked why they couldn’t just do it themselves.

    Over the years, as I broadened my focus from self-care to family caregiving, the range of care tasks that came into view greatly expanded. Users need help remembering and keeping track of all sorts of life management issues — such as cooking, cleaning, companionship, appointments, and transportation — not just medical activities.

    The above lessons learned about real-world regimes led to:

    • Unfrazzle must be flexible enough to accommodate people’s actual regimens, rather than be limited to some pre-defined set of academically defined regimens.
    • Users must be able to input and change their own regimes. Doing it for them can be disempowering and often impractical.

    We Live in a Network of Mutual Caregiving

    An estimated 65 million adults in the U.S. are family caregivers, providing unpaid care to sick, disabled or aging family members. A big number to be sure, but in some ways an undercount. Many more people are involved in the wellbeing of others — spouses, children, friends, and pets — and their responsibilities include remembering and keeping track of care activities for these family members.

    People often used our “self-care” tools (Zume Life and Tonic) for the care of others. Sometimes this was minor, such as adding a pet cat’s monthly flea medicine to the user’s own regimen. Other times the other person was core to the tool’s usage, such as a father using Tonic to manage his daughter’s cystic fibrosis treatment.

    We came to learn that a caregiver never has just one care “recipient” — at the very least the caregiver is taking care of himself as well as the other person. From research conducted to map family care networks, we came to see that many people are often involved, and that caregiving is often mutual (people care for each other). Each person may be involved in the care of several people (and pets), and in turn each person may be taken care of by several people.

    It’s a complex and shifting web, not a simple caregiver–care recipient dyad.

    Caregivers are often involved only on an “as needed” basis. They step in to help when asked, when there’s a crisis. There’s a hidden problem here, though. During the down times, when they’re not providing care, they worry a great deal about whether they should be doing something. And it is the “not knowing” — not knowing if an aging mother has taken her medications, not knowing if the mood of a friend going through chemo is high or low, not knowing whether a husband has gone for his walk or not — that causes perhaps the most angst.

    Caregivers want to know what is going on.  From a product developer perspective, though, it is even more important for users to know they have easy and rapid access to information whenever they choose to look. They want reassurance or confidence that when they next worry about what’s going on, they can quickly find out.

    For most of our users, health professionals were not involved in the use of these tools. The first version of Zume Life included extensive provider functionality (dashboard, escalating alerts, charts, etc.). But providers were uncomfortable with the flexibility the tool allowed users, and were also just slow in roll-out. To get quicker user feedback, we opened the solution to the general public, and were overwhelmed by demand. We discovered that people want relief now, and are quite willing to get it without doctor involvement. So, we pivoted, and never looked back.

    There were some who involved their doctors directly. One early Zume Life user shared her medication and pain tracking data with her doctor (using paper), and together they experimented with medication timing and dosage to lower her pain episodes significantly. A couple using Tonic to track the condition of their newborn son shared the results with his care team (by passing around their iPhone), and were reassured that he was progressing well. Such rudimentary data sharing — no integration with EMRs, no fancy charts — still proved to be very valuable, and much better than no data or vague recollections.

    Understanding these care networks has led to these conclusions:

    • Users must be able to include care tasks not just for themselves, but for whoever else they are caring for.
    • Users want to choose who they connect with. They need to control how much and what information to share with each person, and be able to give and revoke access at any time.
    • For some family caregivers viewing another person’s data is not enough, they also need to make entries and to even change the regimens for their loved ones.
    • Even the most rudimentary data sharing with health professionals can be very valuable.

    Living is Much More Important Than Adherence

    As soon as we started interviewing Zume Life users and analyzing their product usage patterns, a contradiction became apparent.  People were highly attached to the tool, so much so they didn’t want to give it back, however they were also non-adherent, they weren’t making entries on a regular basis.

    This conundrum has held true through the various versions of Zume Life, Tonic and Unfrazzle. Trying to understand this has led to three key lessons:

    First, people care more about doing than tracking. While they often find value in getting the reminders, they don’t always see a need to confirm their actions by checking a box or by making an entry of a “normal” measurement. People are more likely to make entries when their health is less-than-normal, with the expectation that tighter adherence and more conscious observations will speed recovery. So, while analysis of users’ entered data implied non-adherence to the tool and the regimen, the users were actually using the tools and being adherent to the extent they felt appropriate.

    Second, using the tool helps improve the user’s ability to do without the tool. Zume Life and Tonic users reported a significant lowering of anxiety as one of the results of using those tools. They were much more relaxed knowing the tool would take care of remembering tasks and keeping track of whether they were completed of not. It’s much like writing down your grocery list so you don’t stress about whether you’ve remembered to buy everything.

    This relief was expected. Mental relief is the key benefit felt by users. What was unexpected was that users found themselves better able to remember that it was time to do something even before the reminder went off. They could even turn off the reminders, and be quite adherent without the stress they’d previously felt. When the regimen changed, and the user had to get used to a new schedule,  they would turn the reminders back on. Basically, it became a tool to always have around, and to use whenever necessary.

    Third, and most important, adherence is a much lower priority than living life. Users would often choose to be non-adherent or to have less-than-perfect adherence. We could understand occasional non-adherence, that people had other responsibilities (jobs, family, social obligations, etc.) and they prioritized as best as they could in the moment.

    More difficult to understand were users who had very serious conditions and who were clearly dedicated to taking good care of themselves, but who would also turn off their reminders, sometimes for weeks, and muddle through. One user, for whom even good days involve a few hours of self-care, explained that when her health was reasonably steady, she devoted all her energies to her children, family and profession. When her health took one of its frequent downturns, she again devoted herself to recovery, and relied on the tool to be very adherent.

    Quite simply, she prioritizes living over health management as much as possible.

    These three lessons have in turn led us to design Unfrazzle in the following ways:

    • A key goal is to make it easier for users to do what they want to do, to allow them to have more time and energy for whatever else is important in their lives.
    • The user knows better than us when to be adherent, and so Unfrazzle does nothing to “motivate” or “nag” them to be adherent. We even removed the subtle color feedback about an entry being “late” that was in earlier versions.
    • We don’t judge the value of Unfrazzle by how often people use it. Instead, we judge the value by noting to what extent Unfrazzle becomes part of the user’s basic toolkit, something they just always have with them.

    The Beginning of an Essential Tool

    Heeding all the lessons explored above has led us to design Unfrazzle with points-of-view often quite different than traditional “adherence” apps:

    • It is about the family, not health professionals, though they could also benefit.
    • It is about the caregiver, not the care recipient.
    • It is about everyday, mundane caregiving, not crises, though those will also be more manageable.
    • It is about all health and wellness activities, not just medications or specific disease issues.
    • It is all about making it easier to do what you want to do, not about adherence.

    Moleskine, the famous maker of notebooks (the old-fashioned paper kind), recently introduced a line of specialized notebooks: a tea journal, a dog journal, a film journal, etc. Each has pages designed for that particular topic. These are very nice additions, but they don’t replace the basic, blank notebook which can be used to write about anything, including tea, dogs, and films. The blank notebook is the essential tool. The specialized ones are for occasional use.

    After many years of iterating and improving through many earlier versions, I think Unfrazzle finally has the basic functionality required to be an essential tool, helping caregivers with anything they have to deal with. Like Henry Ford’s Model-T, this should have widespread usefulness while also opening the door to enormous improvements to come.

    It is the end of the beginning.

    Rajiv Mehta is the CEO of Unfrazzle, on the board of the Family Caregiver Alliance, and co-organizer of the Quantified Self.

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    7 Responses for “Self-Care and Caregiving Apps Development”

    1. hi Raj,
      Great post diving into the realities of daily life for caregivers and those coping with chronic illnesses! I appreciate the person- and caregiver-centered approach you’ve taken in developing this, and especially like that it’s a flexible tool that is not disease-specific.

      And guess what, I finally had a chance to try Unfrazzled this past week…so we’ll have to talk some time soon.

    2. Rajiv Mehta says:

      Hi Leslie — you should know that I was inspired to write this after seeing your excellent post on technology for caregivers. You did a great job describing the view from a thoughtful doctor. Here I’ve tried to describe what I’ve seen from a different perspective.

    3. Scott McClain PAC says:

      Great post! I love the idea of unfrazzle. I think non compliance is always going to be an issue to an extent but I believe allowing others to be involved will help. This is a very diverse tool that can be adapted easily! Thanks Raj!

      • Rajiv Mehta says:

        Thanks Scott. The adaptability/flexibility of Unfrazzle has allowed people to use it in surprising ways. One person used the “list” feature to have a handy list of appropriate phrases to use when talking with a difficult care recipient (a person with Alzheimer’s). Another realized she could create a journal for tracking her car mileage, along with the symptoms & observations she was tracking. Some of this unexpected usage will certainly hit the limits of what Unfrazzle can do, helping to identify future directions.

    4. Habibi says:

      very interesting information!.

    5. Cathy Lott says:

      I’m going to download Unfrazzle right now! It does seem like an essential tool that I’m so excited to get started with. I was reading an article about ways to alleviate stress and anxiety https://www.slixa.com/under-cover/327-what-are-your-plans-tonight-a-few-tips-for I’m going to go and post the link to this article there too because other than her recommendations of water, getting enough sleep and meditation, I’m sure Unfrazzle can help her too. WTG, this looks like the best caregiving app yet.

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