Taming Complexity: Making self care easier
- 1. TAMING COMPLEXITY Making self care easier Rajiv Mehta Tonic • Self Care Assistant Hi, Iʼm Rajiv Mehta. Iʼm going to tell you about an app called Tonic. For the conference, BJ wants to know what really works. For that it helps to know what it was trying to do. Many solutions focus in on a very specific issue. This focus, this simplicity, often helps lead to success. Often however real world health does not permit such focus, as it is inescapably complex. I want to try and convey this complexity — what it looks like, where it springs from — and then share with you specific examples of how Tonic has helped people manage the complexity.
- 2. Inescapable Complexity ... of real world health 2 The complexity I speak of is all around us, if we but look. But, Iʼll start with one example — a young woman with cystic fibrosis — to show what someone has to do to manage health.
- 3. Inescapable Complexity A medication ... 3 Thereʼs a medication — in this case Pulmozyme, a drug used to reduce lung infections and improve lung function for a person with cystic fibrosis. Adherence to this medication regimen is very important. So one may think that focusing on this would be a good thing to do ...
- 4. Inescapable Complexity ... and associated metrics & symptoms ... 4 ... but, itʼs also important to keep track of some biometrics and symptoms associated with this condition ...
- 5. Inescapable Complexity ... and everything else prescribed ... 5 ... and the doctors have in fact prescribed several medications, therapies, biometrics, symptoms, and chores that also must be done properly every day.
- 6. Inescapable Complexity ... plus other health practices ... Meds: ~13 Other: ~7 Times: ~18 6 In addition, this personʼs regimen included several nutritional supplements. This is quite common. A wide variety of complementary and alternative medicine practices are increasingly common in the US. People see their regular, Western-medicine doctor, while at the same time incorporating chriopractory, yoga, Chinese herbs, aryuvedic medicine, etc. into their health practices. Note that on this particular day, this woman had to deal with 13 medications, and 7 other items, that occurred at 18 different times during the day.
- 7. Inescapable Complexity ... that change over time ... 7 That was just one day ... peopleʼs health regimens are constantly changing. - New medications are created. - Therapies are discovered and improved. - Health improves or deteriorates. - The body breaks down as we age. - And temporary illnesses come and go.
- 8. Inescapable Complexity ... for everyone in the family 8 And it's not just your own health you might be dealing with — your spouse, children, parents, in-laws, and others. Some of them may have simple regimens. Some may be very complex. The point is that this is the reality of health self-management for many people. This is everyday experience; the norm is complexity. People cannot escape this complexity. They cannot choose to focus in on just one thing, to declare success by optimizing their management of just one thing. Instead, to have resilience in health and life, they have to somehow manage everything at least reasonably well. The burden of managing this complexity day in and day out is high. It is this that Tonic is aimed at: helping people manage the messy complexity of real-world, day-to-day health.
- 9. Tonic Remember and keep track of everything in your health regimen 9 Tonic basically helps the person remember and keep track of anything in their health regimen. Tonic does not prescribe anything; it supports an individualʼs personal health practice, whatever it is. Tonic is designed in a way that allows the user to customize it to their health activities, and to continuously modify it as needed. Let me tell you about some Tonic users.
- 10. Julie Cystic Fibrosis • ~50; retired MD; wellbeing consultant Meds: ~13 Regimen Other: ~6 • 8 Rx (pills, inhaler, aerosolized) & 5 OTC meds Times: ~20 • Eat every 2-3 hours • Vest, exercise, meditation; weight; med/device prep • Recent past: in-home IV treatment — more complexity 10 Julie has Cystic Fibrosis, like the diagram I showed you earlier. Sheʼs about 50. Sheʼs a retired doctor, but runs a personal wellbeing consulting business. Her daily regimen is just as complicated as that earlier diagram. In fact, when Julie first started using Tonic, her regimen was even more complicated due to in-home IV treatment. Julie is a very organized person. She has tried all sorts of ways to be organized and to remember everything in her regimen. What sheʼs been finding most useful is a daily morning ritual of arranging her meds and other items for the day ahead. She also has a couple of important visual cues. One is a large tackle box (like what fisherman use) that holds her meds. The traditional plastic pill box is too small for her needs. The other is a 3-shelf cart, on rollers, with a lot of her equipment — she calls it her "lung cart" — that she moves around the house with her. Given that sheʼs so organized, her expectation was that Tonic would be most useful for helping her recall whether she had done something or not — basically looking at the items checked off to answer the question “Oh, did I remember to do xxx?” — essentially a retrospective use. In fact, Julie was surprised at how she quickly she became reliant on Tonicʼs reminders. This really hit home when she had to live without her iPad for a few days, and only then realized how much of a mental burden all that remembering is.
- 11. Yamini Breast Cancer • ~30 Meds: ~11 Chemotherapy Regimen Other: ~19 Times: ~20 • 11 medications & supplements - 3-week cycle; as few as 3 — as many as 9, depending on the day • Treatments; exercises; biometrics; 12 symptoms to observe Radiation Therapy Regimen Meds: ~3 • Less complicated; daily radiation session (M-F) Other: ~11 Times: ~12 Next: Hormone Therapy 11 Yamini is a young professional woman dealing with breast cancer. When she first started using Tonic she was undergoing chemotherapy. Every three weeks she would go to a hospital for the chemo treatment. In between, she had to follow a complicated in-home regimen, which was often different one day to the next. It was important to keep careful notes about her condition, her symptoms. This proved to be very difficult. Physically and mentally she was exhausted. She tried to keep a notebook handy, but often just ended up trying to remember later what she had experienced. But, she always had her phone with her, so once she started using Tonic, both the remembering to do and keeping track of symptoms became easier. She's now moved to radiation therapy, which has a very different regimen. Itʼs easier only in a relative sense. When thatʼs over sheʼll move to a hormone therapy, which will be simpler still. Throughout these changes, sheʼs been able to modify Tonic as needed.
- 12. Sara Parkinson’s Disease • ~40; engineer; business owner; health student; parent Regimen Meds: ~6 Other: ~3 • 6 meds; different combinations; 6 times a day Times: ~8 • physical therapist; gym; stretching program • weight 12 Sara has to cope with Parkinsonʼs Disease. Sheʼs about 40, an accomplished engineer, currently studying health. Daily she has to take 6 different meds, in different combinations, at 6 different times. There are also various physical exercises she does throughout the week. She cannot afford to screw things up — making a mistake leads to immediate consequences. So she lives a very disciplined, regimented life ... and has managed quite well without a tool like Tonic. However, it was only after she started using Tonic that she realized how much mental effort all that discipline was costing her. She was shocked to find how quickly she relied on Tonicʼs reminders, and how quickly she noticed a change. She commented to me that sheʼs noticed how she no longer checks her watch all the time.
- 13. Andreas Child w/ Cystic Fibrosis • ~40; lawyer; leads a CF patient group • Daughter has CF; 4,500 hours of in-home care to-date • 5 regular caregivers Meds: ~12 Regimen Other: ~7 • 8-10 Rx; enzyme supplements; sunflower oil Times: ~12 • Diet journal; pain journal • Therapy exercises; spirometry; weight; med/device prep 13 Andreas has a different situation — itʼs not his own health, but that of his young daughter that he has to manage. In addition to the complexity of dealing with CF (as youʼve seen from the earlier examples), his situation has the additional complexity of 5 regular caregivers: the two parents, a physical therapist who visits weekly, and two adults at the child's school. That's not counting doctors and such who are involved much less frequently. So, he's not taking care of everything. Both by personality, and by the nature of the situation, Andreas is not as organized as the previous examples. He's tried many organizational tools, but found that they caused more hassle rather than make life easier. So, he was willing to try Tonic, but didnʼt have high hopes. What he has come to really like is Tonicʼs flexibility, and that the tool is fully under his control. His attitude is simple: He does not want to be a slave to a tool; he wants the tool to work for him. For example, he had been most concerned about stomach pains his child was complaining about, and interested in how they were related to diet. But, recently he's more concerned about her lung function and the impact of some home-therapy treatments. So, he's using Tonic as a tool to help him experiment, to better understand his daughter's condition and what helps and what doesn't. Heʼs now so enthusiastic that heʼs introducing Tonic to other people in the CF community in his country, and exploring how it might play an important role in various national registries under development there.
- 14. Steven Wellness Program • ~40s; health care designer & developer; educator Regimen Meds: 4 • PAGG fat-loss regimen (The 4-Hour Body) Other: 1 Times: ~4 14 The last story is of Steven, who has a very different situation than the previous stories. He is very healthy, organized and disciplined. Seemingly not someone who would have a need for Tonic. But, heʼs been trying to follow one of the regimens from Tim Ferrissʼs book “The 4-Hour Body”. Itʼs pretty simple: 4 different nutritional supplements taken before breakfast, lunch, dinner, and bed. And yet he had found that heʼd been forgetting about 20% of the time, making it difficult to judge how well the regimen was working. Once he started using Tonic, thereʼs been no forgetting. So, even for him, remembering is non-trivial. Which helps make my point that remembering and keeping track of oneʼs health regimen is a complex task for most people ...
- 15. Tonic • Self Care Assistant Remember and keep track of everything in your health regimen ... make it easier to take care of yourself Rajiv Mehta rajivzume@gmail.com (440) 941-6251 15 ... and why solutions like Tonic are very much needed. Thank you.