Health technology for the other 99% (MedicineX Sep 2013)
1. Health Technology
for the other 99%
Medicine X, Stanford, 27 September 2013
Rajiv 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.
2. Medicine X, Stanford, 27 September 2013 Rajiv Mehta
People caring for
themselves and their
family & friends
“self-care”
“family caregiving”
2
I’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.
3. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Traditional perspective:
Doctors & Patients
3
Person
Healthcare
Professional
Traditionally for health technology we see healthcare professionals and people (also known as patients)
4. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Doctors & Patients & Technology
4
Person
Healthcare
Professional
MOST
Health technology efforts
SOME
Patient Engagement
Telemonitoring
Patient 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.
5. Rajiv MehtaMedicine X, Stanford, 27 September 2013
For most of our lives (>99%) we take
care of ourselves
5
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.
6. Rajiv MehtaMedicine X, Stanford, 27 September 2013
For most of our lives (>99%) we take
care of ourselves
6
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.
7. Rajiv MehtaMedicine X, Stanford, 27 September 2013
For most of our lives (>99%) we take
care of ourselves
7
This 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.
8. Rajiv MehtaMedicine X, Stanford, 27 September 2013
For most of our lives (>99%) we take
care of ourselves
8
Health Technology
for 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.
9. Rajiv MehtaMedicine X, Stanford, 27 September 2013
A diagram of health self-
management
9
Person
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)
affect
Goals
& Plans
affect
Observations made by
New 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.
10. Rajiv MehtaMedicine X, Stanford, 27 September 2013
HCPs may have a strong influence on
the person’s activities
10
Person
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)
affect
Goals
& Plans
Observations made by
New 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.
11. Rajiv MehtaMedicine X, Stanford, 27 September 2013
It’s complicated ...
11
There are inner loops of execution, with many
opportunities for failure (e.g. “non-adherence”)
Person
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)Observations made by
affect
to accomplish
Goals
& Plans
Tasks
affect
New observations ... ... suggest new Actions ...
affect
HCP
inform
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.
12. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Endless torrent of mundane tasks
12
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.
13. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Endless torrent of mundane tasks
13
MEDICATIONS
6a 9a noon 3p 6p 9p midnight
Insulin Novolin
Insulin Novolog
Metformin
ACE Inhibitor
Multi-vitamin
Ibuprofen
Blood glucose
Blood pressure & pulse
Weight
EXERCISE
Walk/Swim
Yoga
DIET/FOOD
Food Journal
Carbs
OBSERVATIONS
Sleep
Excessive thirst
Excessive sweating
Mood
BIOMETRICS
Herbal supplements
THERAPIES
Foot massage
Breathing exercise
6a 9a noon 3p 6p 9p midnight
MEDICATIONS
Morning supplements (6)
Albuterol (nebulizer)
Hypertonic saline (nebulizer)
Pulmozyme (nebulizer)
Tobi antibiotic (nebulizer)
Pancreatic enzymes
Advair
Noon supplements (4)
Evening supplements (4)
Bedtime supplements (4)
Caloric shake
THERAPIES
Vest
Acapella
BIOMETRICS
Weight
OBSERVATIONS
Sleep
Mood
Coughing episode
OTHER
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.
14. Rajiv MehtaMedicine X, Stanford, 27 September 2013
It’s more complicated ...
14
And outer loops — health is a means to higher-
level life goals
Person/Family
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)Observations made by
affect
to accomplish
Goals
& Plans
Life
affects
Tasks
affect
New observations ... ... suggest new Actions ...
affect affect
HCP
inform
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.
15. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Most people aren’t hermits
15
They belong to family groups whose actions are
intertwined and have strong interactions
Person/Family
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)Observations made by
affect
to accomplish
Goals
& Plans
Life
affects
Tasks
affect
New observations ... ... suggest new Actions ...
affect affect
HCP
inform
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.
16. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Networks of care
16
We 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.
17. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Real-world care networks
17
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.
18. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Often many external influencers
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Person/Family
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)Observations made by
affect
to accomplish
Goals
& Plans
Life
affects
Tasks
affect
New observations ... ... suggest new Actions ...
affect affect
Influencers
(HCPs, “alternative” practitioners,
media, extended family & friends)
inform
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.
19. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Framework for seeing health
technology opportunities
19
Person/Family
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)Observations made by
affect
to accomplish
Goals
& Plans
Life
affects
Tasks
affect
New observations ... ... suggest new Actions ...
affect affect
Influencers
(HCPs, “alternative” practitioners,
media, extended family & friends)
inform
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.
20. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Much happening in certain areas
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Person/Family
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)Observations made by
affect
to accomplish
Goals
& Plans
Life
affects
Tasks
affect
New observations ... ... suggest new Actions ...
affect affect
Influencers
(HCPs, “alternative” practitioners,
media, extended family & friends)
inform
Inform
inform
create
Measure
inform
inform
Analyze
Communicate
support
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.
21. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Missing: Help to do the doing
— “productivity” tools
21
Person/Family
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)Observations made by
affect
to accomplish
Goals
& Plans
Life
affects
Tasks
affect
New observations ... ... suggest new Actions ...
affect affect
Influencers
(HCPs, “alternative” practitioners,
media, extended family & friends)
inform
Inform
inform
create
Measure
inform
inform
Analyze
Communicate
support
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.
22. 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.
23. Rajiv MehtaMedicine X, Stanford, 27 September 2013 23
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.
24. Rajiv MehtaMedicine X, Stanford, 27 September 2013
24
Afternoon walk
Sue
Works full-time
Some health issues
- Manages own health
Bill
Mary
Chronic heart &
lung issues
- Manages own
health with
assistance
Anka
Neighbor
Yoko
Fitness coach
Joey
Gizmo
M
orning
m
eds
&
backup
Flea
m
eds
&
food
Evening meds, appointments, chores, ...
Meds
Exerciseprogram
I’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.
25. Rajiv MehtaMedicine X, Stanford, 27 September 2013 25
Sue’s Journals Sue’s Events
Thu, 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.
26. Rajiv MehtaMedicine X, Stanford, 27 September 2013 26
Sue’s Journals Sue’s Events
Thu, Sep 19, 2013
Sue’s Family
Sue's own health regimen, listed alphabetically, consists mainly of exercises and journaling about certain symptoms and activities.
27. Rajiv MehtaMedicine X, Stanford, 27 September 2013 27
Sue’s Journals Sue’s Events
Thu, Sep 19, 2013
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.
28. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Sue’s view of
Mary’s Events
28
One of Mary’s
Event 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.
29. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Sue’s view of
Mary’s Events
29
One of Mary’s
Event entries
Sue’s view of
Mary’s Journals
Sue chooses to view
Mary’s data
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.
30. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Sue’s view of
Mary’s Events
30
One of Mary’s
Event entries
Sue’s view of
Mary’s Journals
Sue chooses to view
Mary’s data
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 ...
31. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Sue’s view of
Mary’s Events
31
One of Mary’s
Event entries
Sue’s view of
Mary’s Journals
Sue chooses to view
Mary’s data
... 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.
32. Rajiv MehtaMedicine X, Stanford, 27 September 2013
Make caring easier!!
32
Person/Family
Health / Wellbeing
Disturbances / Environment
take(s) Actions (Daily Living)Observations made by
affect
to accomplish
Goals
& Plans
Life
affects
Tasks
affect
New observations ... ... suggest new Actions ...
affect affect
Influencers
(HCPs, “alternative” practitioners,
media, extended family & friends)
inform
Inform
inform
create
Measure
inform
inform
Analyze
Communicate
support
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.
33. rajiv@bhageera.com • 650 823-3274
Medicine 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.