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Reframing Health
as more than Health-care
Recognizing the importance of self-management
and the role individuals have
in designing their own well-being




Rajiv Mehta & Hugh Dubberly
Improving health-care
is a “wicked problem”
No consensus on “the problem”

No “stopping rule”

No clear-cut formula for judging solutions

Every solution is a “one-shot operation”

No clear-cut list of alternative solutions

Each person’s situation is unique
—after Horst Rittel

                                             R 2
Wicked problems can only
be resolved by reframing
This talk describes a growing trend, broadening...

health to well-being

health-care to self-management

the role of patients to that of experiment designers



This trend parallels a shift in design practice, enabling...

users to be designers
                                                         H 3
What is health?




                  R 4
Traditional frame: illness
Today, health is often seen
as the absence of disease
or infirmity.


                              R 6
Traditional health-care
        focuses on acute problems


 Goals Eliminate or minimize
       acute disease and infirmities



Means Medicine and therapies
      administered by HCPs
      with patient’s consent;
      patients have little say in
      means


                                      H 7
Health-management focuses
        on chronic conditions


 Goals Eliminate or minimize          Manage chronic conditions;
       acute disease and infirmities   avoid or slow deterioration
                                      leading to acute problems


Means Medicine and therapies          Medicine and therapies
      administered by HCPs            prescribed by physicians
      with patient’s consent;         and administered by patients,
      patients have little say in     who may have other priorities
      means                           or may reject means


                                                                      H 8
Behavior does not change
on a physician’s orders
“Take medication as directed”

“Walk 10,000 steps”

“Get 8 hours of sleep”

“Snacks/sweets only on days
beginning with S”...

Result: poor compliance



                                R 9
Pathology-focused solutions
fail to see the whole person
Narrow focus on
asthma, CHF, or diabetes,...

Pill reminders

Trackers for diet, exercise,
mood, pain...

Bio-metric devices...

Result: modest impact

                               R 10
HCP-patient relationships
are not symmetrical
We call individuals patients

Doctors and nurses are professionals

Professionals care for patients

Patients passively receive treatment

Patients who do not follow a physician’s orders
are not in compliance



                                                  H 11
In wicked problems,
we share a “symmetry
of ignorance”
           —Horst Rittel




                           H 12
The tools of acute-care
are ill-suited to chronic-care
The American Heart Association reports,
“The No. 1 problem in treating illness today
is patients’ failure to take prescription medications.”

That’s blaming patients.

Leonard Syme suggests, “We need to pay attention
to the things people care about, and stop being
such experts about risk factors.”



                                                      R 13
Reframing: Well-being
Health is a state
of complete physical,mental,
and social well-being
and not merely the absence
of disease or infirmity.
—World Health Organization (WHO),1948


                                        R 15
Health is “a resource for life,
not the objective of living”
—World Health Organization (WHO), 1986




                                         R 16
Well-being depends on
       more than health-care

Goals Health: complete physical,
      mental and social well-being


Means Acute care     Chronic care    Self-management
                                     supported by HCPs,
                                     friends, and family

                                     Other means, such as:
                                     - Employer practices
                                     - Social policies
                                     - Essentials:
                                       clean air + water
                                       food + shelter
                                       education + stability
                                                               H 17
Well-being is a means,
       not an end
Goals Quality of everyday living



Means Health: complete physical,                               Other goals/means,
      mental and social well-being                             such as:
                                                               - Love of family + friends
                                                               - Valued work
Means Acute care      Chronic care   Self-management           - Financial security
                                     supported by HCPs,        - Physical security
                                     friends, and family       - Participation in society
                                                               - Fun + joy
                                     Other means, such as:
                                     - Employer practices
                                     - Social policies
                                     - Essentials:
                                       clean air + water
                                       food + shelter
                                       education + stability
                                                                                        H 18
What is self-management?
Goals Quality of everyday living



Means Health: complete physical,
      mental and social well-being


Means Acute care      Chronic care   Self-management
                                     supported by HCPs,
                                     friends, and family
Means Medicines +     Medicines +    People actively involved
      therapies       therapies      in their own:              ...in relation to their:
                                     - monitoring...            - bodies
                                     - goal-setting...          - diet
                                     - experimenting...         - activities
                                     - understanding...         - relationships
                                     - reflecting...             - environment
                                                                                           H 19
Some data
The norm:
         complex self-management
                    49.2                                                  Millions of people
          50
                                                                          reporting selected
                                                                          conditions
          40                   36.8
                                                                          2003
                                      30.3
          30
                                             19.2
          20
                                                    13.7
                                                           10.6
          10
                                                                    2.4
              0
                   ns


                           on


                                               rs


                                                e

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                                               rs


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          y


                   H




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       ar




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  on




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  lm
Pu




                                                                    Source: Milken Institute
                                                                                               R 21
Projected rise in chronic
         disease from 2003 to 2023
          70
                                                       62%
          60                         54%         53%
          50
                               39%         41%
          40
                    31%                                        29%
          30
          20                                                            19%
          10                                                            Population
                                                                        Growth
              0
                   ns


                           on


                                               rs


                                                e

                                               es


                                               rs


                                                               e
                                             as




                                                                k
                                           de




                                            ce
                                            et
                  tio




                                                             ro
                           si




                                          se
                           n




                                         ab


                                         an
                                         or




                                                         St
            di


                        te




                                       Di
                                       is
          on




                                       C
                                      Di
                      er


                                  lD


                                    rt
         C


                    yp




                                 ea
                               ta
          y


                   H




                               H
       ar




                         en
  on




                        M
  lm
Pu




                                                               Source: Milken Institute
                                                                                          R 22
Chronic health conditions
are often interrelated
A survey of 120,000 employees found:



No chronic conditions   23%            19%      5 or more


                                         8%       4 conditions


         1 condition    22%             12%      3 conditions

                                 16%

                                 2 conditions


                                                                Source: IBI
                                                                              R 23
Making this real
People care about Life ...




                             R 25
... and cope with Health




                           R 26
Diabetes
~24m adults have diabetes (mainly type 2)
~10m have 1 additional chronic illness
~ 6m have 2 or more additional chronic illnesses

Medications              Health Status                          Context
Insulin Novolin          Physical Symptoms                      Social
Insulin Novolog
                         Fatigue                                Activities
Metformin
                         Frequent urination                     Social interaction
ACE inhibitor
                         Excessive thirst
Multi-vitamin
Ibuprofen
                         Sudden weight loss                     Work
                         Blurred vision
                                                                Workload
                         Cold sweat
Therapies                Headache
                                                                Work conditions

Foot massage
                         Psychosocial Health                    Geographic
                                                                Location
Biometrics               Mood
                         Anxiety
                                                                Environmental stressors
Blood glucose            Stress
Blood pressure / pulse   Overall Health
Weight
                         Medication Notes
Exercise                 Side effects, such as...
Various                  Injection site pain/redness/swelling
                         Rash
                         Shortness of breath
Diet
Food journal
Calorie counting



                                                                                          R 27
Chron’s Disease
~500,000 adults



Medications                  Health Status                      Context
Humira                       Physical Symptoms                  Social
Azathioprine
                             Fatigue                            Activities
Bupropion (depression)
                             Nausea                             Social interaction
Folic Acid
                             Loss of appetite
Vitamin B12
Calcium + Vitamin D
                             Abdominal Pain                     Work
                             Diarrhea
                                                                Workload
                             Bloody Stools
Therapies                    Rectal Bleeding
                                                                Work conditions

Relaxation exercises
                             Psychosocial Health                Geographic
                                                                Location
Biometrics                   Mood
                             Anxiety
                                                                Environmental stressors
Weight                       Stress
Temperature (as needed)      Overall Health


Exercise                     Medication Notes
Yoga                         SIDE EFFECTS
Walking                      Injection site pain/red/swelling
                             Rash
                             Shortness of Breath
Diet                         Joint pain
Meticulous food journaling   CONTRA-INDICATIONS
                             Cold or Sinus Infections



                                                                                          R 28
Implications for design
A billion little experiments:
each of us figuring out
what’s working for us now
                                         Goals




Observations   compared to goals by...           Person           takes...     Actions affect the...

               New observations suggest...                                   ...new actions




                                                 Body
                                                     affect the




                                             Disturbances                                              H 30
trial and error ≈
           experiment ≈
quality management ≈
                        ≈ design

                               H 31
An enabling infrastructure:
sensors+big data+services
                                                Dialogue




                                                                                           Physician

          Sensors                    Direct Connection




          Observations

                         Phone           Patient’s PC    Web-based      Care-giver’s PC     Nurse or
                     (Network hub)                       Applications                     Health Coach



          Infusion
Patient     Sets



                                                Dialogue                                    Family
                                                                                          and Friends
                                                                                                         H 32
Industrial Age Medicine
Encouraged

              More costly


                            Tertiary    Professional Care

                            Secondary

                            Primary

                                        Self-care (off the map)
Discouraged

              Less costly




                                            Source: Tom Ferguson, 1995
                                                                         R 33
Information Age Health-care
Encouraged

              Less costly


                            Individual self-care

                            Family and friends

                            Self-help networks

                            Professionals as facilitators
Discouraged

              More costly




                            Professionals as partners

                            Professionals as authorities




                                Source: Tom Ferguson, 1995
                                                             R 34
Convergence for health



  Biology        Computing




                             H 35
Patient-driven health-care

“A collaborative co-care model is starting to evolve
for health-care delivery... the patient’s role may
become one of active participant, information
sharer, peer leader, and self-tracker, while the
physician’s role may become one of care
consultant, co-creator, and health co-ordinator.”
—Melanie Swan, International Journal of Environmental Research
and Public Health, 2009




                                                                 H 36
Health frame eras summary
          Traditional                      Emerging
          Health-care frame                Self-management frame

Scope     Relieve acute conditions         Maintain well-being
          Now                              Over a lifetime

Approach Intervention; treatment           Prevention; healthy living
         Expert-directed                   Self-managed
         Apply standards of care           Measure, assess, and adjust; iterate
         Lengthy regulatory pre-approval   Learn and adapt as you go

Subject   Symptoms and test results        Whole person, seen in context

Response Prescribe medication              Improve behavior, environment




                                                                            H 37
...summary continued
Relies on   Medical establishment      Individual, family, and friends
                                       Social networks, others like me

HCP as      Authority, expert          Coach, assistant
            Dispensing knowledge       Learning from patients

Patient as Helpless, child-like        Responsible adult
           Taking orders               Setting goals, testing hunches

Relation    Asymmetric, one-way        Symmetric, reciprocal
            Command and control        Discussion and collaboration

Records     HCP’s notes of visit       Patient’s notes, data from sensors
            Sporadic                   Continuously collected
            Dispersed between offices   Connected; aggregated
            Managed by HCPs            Controlled by patients



                                                                         H 38
Design frame eras summary
           Traditional                Emerging
           Designer frame             Meta-designer frame

Scope      Stand-alone products       Integrated systems of hardware,
                                      software, networked applications,
                                      and human services

           Manufactured, duplicated   Configured, customized

           Single-function tools      Languages, platforms, APIs,
                                      construction kits, kits of parts

Function   Aid consumption            Aid production

Approach Simplify                     Increase choice
         Make it easy                 Make it rich and subtle
         Dumb-down (de-skill)         Create an environment for learning


                                                                         H 39
Patients become designers
                creates conditions in which




Meta-Designer
                                                  creates conditions in which




                                                                                   acts on
                                      Designer




                                                                        User



                       learns from                       learns from            responds to    Artifact



                                                                                    Products

                                                                       Tools

                                Languages (tools for making tools)                                        H 40
Questions to ask yourself
People focus on life,
not health
Are you framing the problem broadly enough?
- Understand full context of person’s life,
   not just the micro-activity
   (e.g. taking a pill, recording weight)

Is your system alleviating or increasing the user’s workload?
- Minimize bio-cost of initiating and using self-management tools
Whose needs are you addressing first and foremost?
- Appreciate centrality of self-directed goals;
  user as final authority of personal goals
  and deciding “what’s best”



                                                                    R 42
Health is multi-factorial

How well are you addressing the user’s unique situation?

Is your system supporting all key factors,
including non-medical factors?

-   Design flexible frameworks,
    customizable by users to their own needs

-   Accommodate, don’t dictate, user’s choice
    of tools, therapies, interests

-   Enable people to design their own well-being



                                                           R 43
Health is dynamic

Is your system meant for on-going or episodic use?

Is it designed to evolve?

-   Design for ongoing, constantly changing, tiny self-experiments

-   Support control and tracking of non-experimental variables




                                                                     R 44
Continuous learning enables
continuous adjustment
To what extent does your system support self-learning?
- Provide auto-analysis of user’s own health experience over time
- Support user self-analysis (e.g. visualization)
How does your system enable learning from others’ experience?
- Support learning from “others like me”
- Support auto-identification of “others like me”




                                                                    R 45
Special thanks to
Paul Pangaro
Shelley Evenson




Rajiv Mehta
rajivzume@gmail.com
650 823 3274




Hugh Dubberly
hugh@dubberly.com
415 468 9799

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Reframing Health as more than Health-care

  • 1. Reframing Health as more than Health-care Recognizing the importance of self-management and the role individuals have in designing their own well-being Rajiv Mehta & Hugh Dubberly
  • 2. Improving health-care is a “wicked problem” No consensus on “the problem” No “stopping rule” No clear-cut formula for judging solutions Every solution is a “one-shot operation” No clear-cut list of alternative solutions Each person’s situation is unique —after Horst Rittel R 2
  • 3. Wicked problems can only be resolved by reframing This talk describes a growing trend, broadening... health to well-being health-care to self-management the role of patients to that of experiment designers This trend parallels a shift in design practice, enabling... users to be designers H 3
  • 6. Today, health is often seen as the absence of disease or infirmity. R 6
  • 7. Traditional health-care focuses on acute problems Goals Eliminate or minimize acute disease and infirmities Means Medicine and therapies administered by HCPs with patient’s consent; patients have little say in means H 7
  • 8. Health-management focuses on chronic conditions Goals Eliminate or minimize Manage chronic conditions; acute disease and infirmities avoid or slow deterioration leading to acute problems Means Medicine and therapies Medicine and therapies administered by HCPs prescribed by physicians with patient’s consent; and administered by patients, patients have little say in who may have other priorities means or may reject means H 8
  • 9. Behavior does not change on a physician’s orders “Take medication as directed” “Walk 10,000 steps” “Get 8 hours of sleep” “Snacks/sweets only on days beginning with S”... Result: poor compliance R 9
  • 10. Pathology-focused solutions fail to see the whole person Narrow focus on asthma, CHF, or diabetes,... Pill reminders Trackers for diet, exercise, mood, pain... Bio-metric devices... Result: modest impact R 10
  • 11. HCP-patient relationships are not symmetrical We call individuals patients Doctors and nurses are professionals Professionals care for patients Patients passively receive treatment Patients who do not follow a physician’s orders are not in compliance H 11
  • 12. In wicked problems, we share a “symmetry of ignorance” —Horst Rittel H 12
  • 13. The tools of acute-care are ill-suited to chronic-care The American Heart Association reports, “The No. 1 problem in treating illness today is patients’ failure to take prescription medications.” That’s blaming patients. Leonard Syme suggests, “We need to pay attention to the things people care about, and stop being such experts about risk factors.” R 13
  • 15. Health is a state of complete physical,mental, and social well-being and not merely the absence of disease or infirmity. —World Health Organization (WHO),1948 R 15
  • 16. Health is “a resource for life, not the objective of living” —World Health Organization (WHO), 1986 R 16
  • 17. Well-being depends on more than health-care Goals Health: complete physical, mental and social well-being Means Acute care Chronic care Self-management supported by HCPs, friends, and family Other means, such as: - Employer practices - Social policies - Essentials: clean air + water food + shelter education + stability H 17
  • 18. Well-being is a means, not an end Goals Quality of everyday living Means Health: complete physical, Other goals/means, mental and social well-being such as: - Love of family + friends - Valued work Means Acute care Chronic care Self-management - Financial security supported by HCPs, - Physical security friends, and family - Participation in society - Fun + joy Other means, such as: - Employer practices - Social policies - Essentials: clean air + water food + shelter education + stability H 18
  • 19. What is self-management? Goals Quality of everyday living Means Health: complete physical, mental and social well-being Means Acute care Chronic care Self-management supported by HCPs, friends, and family Means Medicines + Medicines + People actively involved therapies therapies in their own: ...in relation to their: - monitoring... - bodies - goal-setting... - diet - experimenting... - activities - understanding... - relationships - reflecting... - environment H 19
  • 21. The norm: complex self-management 49.2 Millions of people 50 reporting selected conditions 40 36.8 2003 30.3 30 19.2 20 13.7 10.6 10 2.4 0 ns on rs e es rs e as k de ce et tio ro si se n ab an or St di te Di is on C Di er lD rt C yp ea ta y H H ar en on M lm Pu Source: Milken Institute R 21
  • 22. Projected rise in chronic disease from 2003 to 2023 70 62% 60 54% 53% 50 39% 41% 40 31% 29% 30 20 19% 10 Population Growth 0 ns on rs e es rs e as k de ce et tio ro si se n ab an or St di te Di is on C Di er lD rt C yp ea ta y H H ar en on M lm Pu Source: Milken Institute R 22
  • 23. Chronic health conditions are often interrelated A survey of 120,000 employees found: No chronic conditions 23% 19% 5 or more 8% 4 conditions 1 condition 22% 12% 3 conditions 16% 2 conditions Source: IBI R 23
  • 25. People care about Life ... R 25
  • 26. ... and cope with Health R 26
  • 27. Diabetes ~24m adults have diabetes (mainly type 2) ~10m have 1 additional chronic illness ~ 6m have 2 or more additional chronic illnesses Medications Health Status Context Insulin Novolin Physical Symptoms Social Insulin Novolog Fatigue Activities Metformin Frequent urination Social interaction ACE inhibitor Excessive thirst Multi-vitamin Ibuprofen Sudden weight loss Work Blurred vision Workload Cold sweat Therapies Headache Work conditions Foot massage Psychosocial Health Geographic Location Biometrics Mood Anxiety Environmental stressors Blood glucose Stress Blood pressure / pulse Overall Health Weight Medication Notes Exercise Side effects, such as... Various Injection site pain/redness/swelling Rash Shortness of breath Diet Food journal Calorie counting R 27
  • 28. Chron’s Disease ~500,000 adults Medications Health Status Context Humira Physical Symptoms Social Azathioprine Fatigue Activities Bupropion (depression) Nausea Social interaction Folic Acid Loss of appetite Vitamin B12 Calcium + Vitamin D Abdominal Pain Work Diarrhea Workload Bloody Stools Therapies Rectal Bleeding Work conditions Relaxation exercises Psychosocial Health Geographic Location Biometrics Mood Anxiety Environmental stressors Weight Stress Temperature (as needed) Overall Health Exercise Medication Notes Yoga SIDE EFFECTS Walking Injection site pain/red/swelling Rash Shortness of Breath Diet Joint pain Meticulous food journaling CONTRA-INDICATIONS Cold or Sinus Infections R 28
  • 30. A billion little experiments: each of us figuring out what’s working for us now Goals Observations compared to goals by... Person takes... Actions affect the... New observations suggest... ...new actions Body affect the Disturbances H 30
  • 31. trial and error ≈ experiment ≈ quality management ≈ ≈ design H 31
  • 32. An enabling infrastructure: sensors+big data+services Dialogue Physician Sensors Direct Connection Observations Phone Patient’s PC Web-based Care-giver’s PC Nurse or (Network hub) Applications Health Coach Infusion Patient Sets Dialogue Family and Friends H 32
  • 33. Industrial Age Medicine Encouraged More costly Tertiary Professional Care Secondary Primary Self-care (off the map) Discouraged Less costly Source: Tom Ferguson, 1995 R 33
  • 34. Information Age Health-care Encouraged Less costly Individual self-care Family and friends Self-help networks Professionals as facilitators Discouraged More costly Professionals as partners Professionals as authorities Source: Tom Ferguson, 1995 R 34
  • 35. Convergence for health Biology Computing H 35
  • 36. Patient-driven health-care “A collaborative co-care model is starting to evolve for health-care delivery... the patient’s role may become one of active participant, information sharer, peer leader, and self-tracker, while the physician’s role may become one of care consultant, co-creator, and health co-ordinator.” —Melanie Swan, International Journal of Environmental Research and Public Health, 2009 H 36
  • 37. Health frame eras summary Traditional Emerging Health-care frame Self-management frame Scope Relieve acute conditions Maintain well-being Now Over a lifetime Approach Intervention; treatment Prevention; healthy living Expert-directed Self-managed Apply standards of care Measure, assess, and adjust; iterate Lengthy regulatory pre-approval Learn and adapt as you go Subject Symptoms and test results Whole person, seen in context Response Prescribe medication Improve behavior, environment H 37
  • 38. ...summary continued Relies on Medical establishment Individual, family, and friends Social networks, others like me HCP as Authority, expert Coach, assistant Dispensing knowledge Learning from patients Patient as Helpless, child-like Responsible adult Taking orders Setting goals, testing hunches Relation Asymmetric, one-way Symmetric, reciprocal Command and control Discussion and collaboration Records HCP’s notes of visit Patient’s notes, data from sensors Sporadic Continuously collected Dispersed between offices Connected; aggregated Managed by HCPs Controlled by patients H 38
  • 39. Design frame eras summary Traditional Emerging Designer frame Meta-designer frame Scope Stand-alone products Integrated systems of hardware, software, networked applications, and human services Manufactured, duplicated Configured, customized Single-function tools Languages, platforms, APIs, construction kits, kits of parts Function Aid consumption Aid production Approach Simplify Increase choice Make it easy Make it rich and subtle Dumb-down (de-skill) Create an environment for learning H 39
  • 40. Patients become designers creates conditions in which Meta-Designer creates conditions in which acts on Designer User learns from learns from responds to Artifact Products Tools Languages (tools for making tools) H 40
  • 41. Questions to ask yourself
  • 42. People focus on life, not health Are you framing the problem broadly enough? - Understand full context of person’s life, not just the micro-activity (e.g. taking a pill, recording weight) Is your system alleviating or increasing the user’s workload? - Minimize bio-cost of initiating and using self-management tools Whose needs are you addressing first and foremost? - Appreciate centrality of self-directed goals; user as final authority of personal goals and deciding “what’s best” R 42
  • 43. Health is multi-factorial How well are you addressing the user’s unique situation? Is your system supporting all key factors, including non-medical factors? - Design flexible frameworks, customizable by users to their own needs - Accommodate, don’t dictate, user’s choice of tools, therapies, interests - Enable people to design their own well-being R 43
  • 44. Health is dynamic Is your system meant for on-going or episodic use? Is it designed to evolve? - Design for ongoing, constantly changing, tiny self-experiments - Support control and tracking of non-experimental variables R 44
  • 45. Continuous learning enables continuous adjustment To what extent does your system support self-learning? - Provide auto-analysis of user’s own health experience over time - Support user self-analysis (e.g. visualization) How does your system enable learning from others’ experience? - Support learning from “others like me” - Support auto-identification of “others like me” R 45
  • 46. Special thanks to Paul Pangaro Shelley Evenson Rajiv Mehta rajivzume@gmail.com 650 823 3274 Hugh Dubberly hugh@dubberly.com 415 468 9799