Health technology for the other 99% (MedicineX Sep 2013)

Health Technologyfor the other 99%Medicine X, Stanford, 27 September 2013Rajiv Mehta

Hello ...Innovation depends heavily on the problems we seek to address, on the questions we ask, and how we frame those questions. In my talk, I’d like to suggest a frame different than the one we’re used to thinking about — I want to talk about health technology for the other 99% — the blue dots above, and share with you what I've been doing about it.

Medicine X, Stanford, 27 September 2013 Rajiv Mehta

People caring for themselves and their family & friends “self-care” “family caregiving”

2I’d like to ask for a show of hands. How many of you, in the past 12 months, have provided UNPAID care to a relative or friend to help them care for themselves? This could include medical assistance, household chores, managing finances, arranging services or just visiting regularly to see how they’re doing.

A show of hands please ... that's about 1/4-1/3 of the audience. That compares well with a study Susannah Fox of Pew published recently, which found that 39% of American adults are family caregivers.

My work is focused on helping people care for themselves and their families. On making day-to-day caregiving easier. On making it easier to remember, keep track of, and communicate our caregiving activities. On making life a little less frazzled.

Rajiv MehtaMedicine X, Stanford, 27 September 2013

Traditional perspective:Doctors & Patients

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Person

HealthcareProfessional

Traditionally for health technology we see healthcare professionals and people (also known as patients)


Doctors & Patients & Technology

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Person

HealthcareProfessional

MOSTHealth technology efforts

SOMEPatient Engagement

TelemonitoringPatient Education

PHRs

?

The vast majority of technology for health is oriented towards the needs of health professionals. Patients are not users of such tools; they’re not in the picture.

Some technology, and much of this session, is geared towards doctor-patient interactions. Categories include patient engagement, tele-monitoring, patient education, and personal health records.

Relatively little is geared towards people’s own use; when doctors are not in the picture.


For most of our lives (>99%) we take care of ourselves

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Person

This is surprising because for the vast majority of our lives, health professionals are NOT in the picture. For most of your life, you are being taken care of by yourself and your family.



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US Veterans Health Administration• “The gold dot represents the average number of minutes

(100) a patient spends with a provider per year and the white represents 525,600 minutes in a year”

This point was made in a diagram created by the VA. They note that the average patient spent only 100 minutes a year being cared for by a professional — that’s the gold dot. The white space is the rest of the year, the other 99.98% of the year.

It turns out that this diagram is not accurate — the gold dot is too big.



7This diagram, by Sara Riggare, shows the same thing. You’ll hear more from Sara in the next session. She has Parkinsons, and still she only spent 1 hour with a health professional in 2012. The other 8,765 hours she was on her own.

But, this diagram is accurate. Can you find the gold dot? It's there on the right, at the end.



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Health Technologyfor the other 99%

So, this is what I’m talking about.

Where in the world is technology for this 99%? Why is there so little?!And if we're going to start developing more, what should we make?What technology can help us take care of ourselves?

I’d like to share with you a framework that guides my thinking.


A diagram of health self-management

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Person

Health / Wellbeing

Disturbances / Environment

take(s) Actions (Daily Living)

affec

t

Goals& Plans

affect

Observations made byNew observations ... ... suggest new Actions ...

Here is a diagram of a person taking care of himself.

The person has some desired health goals, and some health-related activities that he plans to do to achieve these goals. On a day-to-day basis he carries out these actions, and they have some impact on his health. His health is also impacted by his environment. Noting his actual health compared to his goals, he may make some changes.


HCPs may have a strong influence on the person’s activities

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Person

Health / Wellbeing


take(s) Actions (Daily Living)

affec

t

Goals& Plans

Observations made byNew observations ... ... suggest new Actions ...

HCP

inform

affect

What the person chooses to do and what he considers proper goals are influenced by his doctors and other health professionals.

This is a nice, simple framework.


It’s complicated ...

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There are inner loops of execution, with many opportunities for failure (e.g. “non-adherence”)

Person

Health / Wellbeing


take(s) Actions (Daily Living)Observations made by

affec

t

to accomplish

Goals& Plans

Tasksaffect

New observations ... ... suggest new Actions ...

affect

HCP

info

rm

Unfortunately, real life is more complicated.

First of all, the person may not carry out his tasks exactly as planned. This “non-adherence” naturally impacts his health and wellbeing.


Endless torrent of mundane tasks

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Day-to-day (even hr-to-hr) tasks for health, wellness,... life in general

Mundane but varied

Appointments, Bathing, Biometrics, Chores, Cleaning, Companionship, Cooking, Dressing, Eating, Errands, Exercise, Grooming, Listening,

Medications, Moving around, Observations, Planning, Shopping, Socializing, Symptoms,

Therapies, Toileting, Transportation, ...

Never ending

Overwhelming!

This failure of execution is not surprising. While each little health-related activity seems simple in isolation, together they can be overwhelming. As all of you who raised your hands earlier know from experience, it’s not just taking one pill on time ... it’s changing diapers and cleaning sheets, it’s preparing special meals and helping with exercise, it’s tracking symptoms and providing emotional support. It's a wide variety of activities, that can happen multiple times each day, for months and even years.


Endless torrent of mundane tasks

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MEDICATIONS6a 9a noon 3p 6p 9p midnight

Insulin NovolinInsulin Novolog

MetforminACE InhibitorMulti-vitamin

Ibuprofen

Blood glucoseBlood pressure & pulse

Weight

EXERCISEWalk/Swim

YogaDIET/FOOD

Food JournalCarbs

OBSERVATIONSSleep

Excessive thirstExcessive sweating

Mood

BIOMETRICS

Herbal supplements

THERAPIESFoot massage

Breathing exercise

6a 9a noon 3p 6p 9p midnightMEDICATIONS

Morning supplements (6)Albuterol (nebulizer)

Hypertonic saline (nebulizer)Pulmozyme (nebulizer)

Tobi antibiotic (nebulizer)Pancreatic enzymes

AdvairNoon supplements (4)

Evening supplements (4)Bedtime supplements (4)

Caloric shakeTHERAPIES

VestAcapella

BIOMETRICSWeight

OBSERVATIONSSleepMood

Coughing episodeOTHER

Clean / Sterilize nebulizers

Here are some examples of the daily health regimens of some people I have worked with. The x-axis covers about 18 hours of the day. The y-axis lists their activities. The top right is a friend’s chemotherapy regimen. Bottom right is a person with cystic fibrosis. On the left is an organ transplant recipient. Even without being able to read the details, you can see that there’s a lot going on.


It’s more complicated ...

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And outer loops — health is a means to higher-level life goals

Person/Family

Health / Wellbeing



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to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect

HCP

info

rm

And all of that has to fit into regular life, which adds it own complexity. Health is not the only priority in your life, and often other aspects of life — work, family and social responsibilities, and your personal happiness — take higher priority.


Most people aren’t hermits

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They belong to family groups whose actions are intertwined and have strong interactions

Person/Family

Health / Wellbeing



affec

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to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect

HCP

info

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In addition, most of us are social, and our lives are interwoven with others — family, close friends, and colleagues.

These networks ... your family, your personal health ecosystem ... that's where most health care really happens.


Networks of care

16We take care of ourselves. We take care of others. And they in turn take care of us. We strongly influence each other.

We are social animals, and our interconnectedness is often so deep and so ingrained that we can often forget how reliant we are on each other.


Real-world care networks

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X

X

These diagrams are from research I did last summer, they show the care networks for two people that were interviewed. The person in the top diagram is a single mother caring for both an aging mother, who lives in a retirement home nearby, and an autistic son, while also raising another child. The person in the lower diagram is caring for a spouse with Alzheimers, while also dealing with his own health issues. In both cases, there’s just a lot of people involved.


Often many external influencers

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Person/Family

Health / Wellbeing



affec

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to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect

Influencers(HCPs, “alternative” practitioners,media, extended family & friends)

info

rm

Also, external influencers include much more than healthcare professionals. There are many alternative health providers, the formal and informal media, neighbors, etc. who have some impact.


Framework for seeing health technology opportunities

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Person/Family

Health / Wellbeing



affec

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to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect


info

rm

This diagram, then, provides a framework for thinking about health technology opportunities, a way to see how we might help the person, the family take care of themselves.


Much happening in certain areas

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Person/Family

Health / Wellbeing



affec

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to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect


info

rm

Inform

inform

create

Measure

inform

inform

Analyze

Communicatesupport

inform

support

There is a lot happening in certain areas:* There are many attempts to improve patient-provider communications* There are lots of efforts to bring better and more personalized information to the public* And the Quantified Self movement is the home for innovations for measuring ourselves and analyzing the data

In other forums I've gone into much more detail for these areas. For today, let me just say that despite all that IS happening, our needs are still barely being met. There's a long ways to go.


Missing: Help to do the doing — “productivity” tools

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Person/Family

Health / Wellbeing



affec

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to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect


info

rm

Inform

inform

create

Measure

inform

inform

Analyze

Communicatesupport

utilize

support

Enable

inform

support

For now, let me direct your attention to what’s really missing — technology that helps people “do the doing”. Think of it as productivity tools for personal health.

To me it’s astonishing that this space has received so little attention. If people can’t do the doing, it really doesn’t matter how brilliant their doctor’s advice is or whether they’re using amazing sensors. It would be like a baseball team, with a brilliant manager and Moneyball-quality analytics, but which lacks decent bats and gloves.

Rajiv MehtaMedicine X, Stanford, 27 September 2013 22

2007 2009 2011 2013

Zume Life

Zume Life

Tonic Unfrazzle

This is what I’ve been working on for the past several years. Products that help people do-the-doing. The learnings from each product contributing to the next. The most recent is called Unfrazzle.


Remember and track all care responsibilities & Stay in-sync with co-caregivers

Unfrazzle is an app, for iPhone and Android, that helps you remember and keep track of all your care responsibilities, whether for yourself, your mother, your son, or your pet cat. And it helps you and your family coordinate these activities.

I'll show you more in a moment, but these four screens show the essence of the app: the people in your health ecosystem; your self-care regimen; and events that you get reminders for and make entries about.


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Afternoon walk

SueWorks full-time

Some health issues- Manages own health

Bill

MaryChronic heart &

lung issues- Manages own

health with assistance

AnkaNeighbor

YokoFitness coach

JoeyGizmo

Morning meds & backup

Flea m

eds &

food

Evening meds, appointments,

chores, ...

Meds

Exercise programI’ll briefly share with you one example, somewhat simplified but fairly common.The family includes Sue and her husband Bill, their son Joey, and Sue’s mother Mary. Not to forget their pet cat Gizmo. We’re going to focus on Sue and Mary. Sue works full time. Health-wise, she’s okay, but is concerned about staying that way. Joey is generally healthy, but at the moment is on an anti-biotic for an ear infection. Most of Sue’s caregiving responsibilities have to do with Mary.Mary has chronic heart and lung conditions. She manages okay on her own when she has to, and even often cares for Joey when his parents are at work. But, Bill helps Mary with her morning meds, neighbor Anka accompanies Mary on afternoon walks, and Sue helps with a lot of things. Sue also works with a fitness coach Yoko.Unfrazzle helps the family remember all the different things they have to do, and helps them stay aware of what and how the others are doing.


Sue’s Journals Sue’s EventsThu, Sep 19, 2013

Sue’s Family

When you look at Sue’s Unfrazzle, you can see the others are part of Sue’s Unfrazzle family.



Sue’s Family

Sue's own health regimen, listed alphabetically, consists mainly of exercises and journaling about certain symptoms and activities.



Sue’s Family

These are Sue’s events, for Thursday, Sep 19 — entries she’s already made, and events scheduled that day.She’s made an entry for the swimming she did that morning.There was a reminder to give Joey his anti-biotic.She’s also noted that she did breathing exercises that afternoon.And later in the day, she’s going to get reminders to help Joey and Mary with some medications.


Sue’s view ofMary’s Events

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One of Mary’sEvent entries

Sue’s view of Mary’s Journals

Sue chooses to view Mary’s data

Sue can also view the data of others in her family. The data she can access is naturally limited to what they’ve chosen to share with her. In this case she has access to all of Mary’s information.



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You can see that there’s a lot more in Mary’s regimen. Understandable given her chronic conditions.Some of these are “assigned to” Sue, or Bill, or Anka, meaning those people get reminder alerts.



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Sue can see Mary’s events. She sees that Mary has taken her morning meds, etc.She can also see that Mary’s made an entry in her pain journal ...



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... apparently her back is hurting from too much gardening.These journals are completely described by the user, in their own words, using a combination of scales, amounts, lists and text.

You can come and speak with me during the lunch time demo session to see more about Unfrazzle.


Make caring easier!!

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Person/Family

Health / Wellbeing



affec

t

to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect


info

rm

Inform

inform

create

Measure

inform

inform

Analyze

Communicatesupport

utilize

support

Enable

inform

support

For now, I would like to urge you to do all that you can to make it easier for your patients and your families to care for themselves.Whenever I speak informally with health professionals, I find they agree whole-heartedly with I’ve presented. In their personal lives — as parents, children, neighbors and friends — this is obvious. But in their professional roles, they often find themselves constrained to helping their patients in much more limited ways. I’d like to urge you to do more, to bring more human understanding, more compassion, more appreciation of real-world living, to your profession.

[email protected] • 650 823-3274Medicine X, Stanford, 27 September 2013

Remember the 99%!

Rajiv Mehta

And, if you’re going to do that, I’d love to collaborate with you.

Thank you.

mailto:[email protected]

mailto:[email protected]

Health technology for the other 99% (MedicineX Sep 2013)

Health & Medicine

Transcript of Health technology for the other 99% (MedicineX Sep 2013)