Personal Informatics in Interpersonal Contextsstanford.edu/~emurnane/files/CSCW18_Ecology_Slides.pdfPersonal Informatics in Interpersonal Contexts: Towards the Design of Technology

Personal Informatics in Interpersonal Contexts:Towards the Design of Technology that Supports the Social Ecologies of Long-Term Mental Health Management

Elizabeth Murnane, Tara Walker, Beck Tench, Stephen Voida, Jaime Snyder

CSCW | November 6, 2018

Serious mental illness (SMI) affects

1 in 4 people in the world at some point in their lives

(World Health Organization, 2018)

!2

Bipolar Disorder (BD)

Fluctuations in • mood • energy • activity

!3

People facing SMI are adapting off-the-shelf

personal informatics tools as part of condition management

Tracking everyday activities improves outcomes and minimizes symptoms

!4

People facing SMI are adapting off-the-shelf

personal informatics tools as part of condition management

Tracking everyday activities improves outcomes and minimizes symptoms

!5

Personal Informatics, Quantified

Self

tracking reflection knowledge experimentation improvement

self-{

Personal informatics grew from an individual-centric orientation

!6

Personal Informatics, Quantified

Self

tracking reflection knowledge experimentation improvement

self-{

Personal informatics grew from an individual-centric orientation

!7

Data practices are • Socially motivated • Collaboratively conducted • Embedded in interpersonal contexts

We need to more explicitly and holistically consider the sociotechnical dimensions of personal health management

!8

We focus on the “long-tail” of self-management

• Ad-hoc, vernacular practices • Potentially outside of clinical oversight • Long-term • Flux-prone

!9

We focus on the “long-tail” of self-management

• Ad-hoc, vernacular practices • Potentially outside of clinical oversight • Long-term • Flux-prone

!10

—— A

UNI

VERS

ITY O

F CO

LORA

DO R

ESEA

RCH

STUD

Y ——

At least 18-years-old and a close family member orfriend of an individual diagnosed with bipolar

Focus groups will be held on the CU Boulder campus and at other community meeting locations in and around the Boulder area.

You’ll be paid $10 per hour. We expect the focus groups to take approximately 2 hours.

A with individuals with bipolardisorder and their close family members and friends: Discuss your with bipolar disorder, your attitude toward self-tracking and technology, and how bipolar disorder shapes (or doesn’t shape)

Emailing [email protected]

Because people need and deserve tools that better , ,and bipolar disorder.

—— A UNIVERSITY OF WASHINGTON RESEARCH STUDY ——

At least 18-years-old, diagnosed with bipolar, and haven’t been hospitalized in the last six months.

Interviews will be at the University of Washington.

You’ll be paid $25 for each interview, for a total of $75.You’ll also receive $5 at each interview for travel costs.

A series of this summer:

Discuss your experience with bipolar.

Draw, brainstorm, and play with ways to express your experience visually.

Give feedback on a series of images the research team comes up with.

Setup a or learn more by:• Calling 206-616-1094, or• Visiting http://blogs.uw.edu/bpstudy/

Because people need and deserve tools that better , ,and bipolar.

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

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OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

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OGS.U

W.ED

U/BP

STUD

Y

• Boulder area • N=8

• Individuals with BD & stakeholders

• Focus groups

• Seattle area

• N=14 • Individuals with BD • 1-on-1 in-person

interviews

Complimentary studies across 2 sites

!11

—— A

UNI

VERS

ITY O

F CO

LORA

DO R

ESEA

RCH

STUD

Y ——

At least 18-years-old and a close family member orfriend of an individual diagnosed with bipolar

Focus groups will be held on the CU Boulder campus and at other community meeting locations in and around the Boulder area.

You’ll be paid $10 per hour. We expect the focus groups to take approximately 2 hours.

A with individuals with bipolardisorder and their close family members and friends: Discuss your with bipolar disorder, your attitude toward self-tracking and technology, and how bipolar disorder shapes (or doesn’t shape)

Emailing [email protected]

Because people need and deserve tools that better , ,and bipolar disorder.

—— A UNIVERSITY OF WASHINGTON RESEARCH STUDY ——

At least 18-years-old, diagnosed with bipolar, and haven’t been hospitalized in the last six months.

Interviews will be at the University of Washington.

You’ll be paid $25 for each interview, for a total of $75.You’ll also receive $5 at each interview for travel costs.

A series of this summer:

Discuss your experience with bipolar.

Draw, brainstorm, and play with ways to express your experience visually.

Give feedback on a series of images the research team comes up with.

Setup a or learn more by:• Calling 206-616-1094, or• Visiting http://blogs.uw.edu/bpstudy/

Because people need and deserve tools that better , ,and bipolar.

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

206-

616-

1094

BPST

UDY@

UW.ED

UBL

OGS.U

W.ED

U/BP

STUD

Y

• Boulder area • N=8

• Individuals with BD & stakeholders

• Focus groups

• Seattle area

• N=14 • Individuals with BD • 1-on-1 in-person

interviews

Complimentary studies across 2 sites

!12

• Characterize relations and roles

• Formalize this social ecology

• Prosthelytize about design

Contributions

!13




Contributions

!14




Contributions

!15




Contributions

!16




Contributions

!17

!18

Bronfenbrenner’s Ecological Systems Theory (EST)

INDIVIDUAL

(sex, age, health, etc.)

MICROSYSTEM

MESOSYSTEM

EXOSYSTEM

MACROSYSTEM

Attitudes and ideologies of the culture

Social services

Neighbors

Local politics

Mass media

Industry

Family Peers

ChurchSchool

Health services

!19

MACROLAYERSociocultural context

EXOLAYERIndirect institutional influences

MICROLAYERClosely involved ties

Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL

Rhythms, life transitions, socio-historical events

LAYER

INFORMATICS LAYER

Communityorganizations

Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism

INTERACTIONPROPERTIES

Relational & mediating roles of personal data

• Individual managing SMI

• Demographics

• Condition characteristics

!20




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism




EXOLAYERIndirect institutional influencesIdeologies

Workplaces Schools

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Societalnorms

Governmentpolicies

Economictrends

Valence

Intensity

Direction

Dynamism




Person with SMI

Family Friends

groupsgivers

Person with SMI

Care SupportHarmful • Dissatisfactory care

• Denial, shame, rejection

• Toxic, triggering influences

Helpful

• Tracking support • Emotional support • Monitoring

• Intervening

!21




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism





Workplaces Schools

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Societalnorms

Governmentpolicies

Economictrends

Valence

Intensity

Direction

Dynamism




Person with SMI

Family Friends

groupsgivers

Person with SMI

Care SupportHarmful • Dissatisfactory care



Helpful


• Intervening

!22




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism





Workplaces Schools

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Societalnorms

Governmentpolicies

Economictrends

Valence

Intensity

Direction

Dynamism




Person with SMI

Family Friends

groupsgivers

Person with SMI

Care Support

Helpful


• Intervening

Harmful • Dissatisfactory care



!23

Exo layer



Workplaces Schools


Healthinsurers

Societalnorms

Governmentpolicies

Economictrends

Person with SMI


Family Friends

Care Supportgroupsgivers

TEMPORAL


LAYER

INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism



TEMPORAL


LAYER

INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism




Ideologies

Societalnorms

Governmentpolicies

Economictrends

Aiding & obstructing

• Financial, instrumental, and emotional needs

• Fear of being “found out” as having SMI

• Health insurance a consistent concern

!24



Workplaces Schools


Healthinsurers

Societalnorms

Governmentpolicies

Economictrends

Person with SMI


Family Friends


TEMPORAL


LAYER

INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism



TEMPORAL


LAYER

INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism




Ideologies

Societalnorms

Governmentpolicies

Economictrends

Aiding & obstructing

• Financial, instrumental, and emotional needs

• Fear of being “found out” as having SMI

• Health insurance a consistent concern

!25




Ideologies

Workplaces Schools

Family Friends


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Person with SMI


Workplaces Schools


Healthinsurers

TEMPORAL


LAYER

INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism



TEMPORAL


LAYER

INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism




Family Friends


Person with SMI

• Stigma & identity

• Tendency to conceal • Shedding societal

attitudes & accepting oneself

!26




Ideologies

Workplaces Schools

Family Friends


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Person with SMI


Workplaces Schools


Healthinsurers

TEMPORAL


LAYER

INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism



TEMPORAL


LAYER

INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism




Family Friends


Person with SMI

• Stigma & identity

• Tendency to conceal • Shedding societal

attitudes & accepting oneself

!27




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism



Person with SMI


Workplaces Schools


Healthinsurers


Family Friends


INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism

PROPERTIES





Ideologies

Societalnorms

Governmentpolicies

Economictrends

• Biological, psychological, and social fluctuations inherent to BD

• Transitional experiences

• SMI linked to more frequent, extreme, irrevocable changes

!28




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism



Person with SMI


Workplaces Schools


Healthinsurers


Family Friends


INFORMATICS LAYER

Valence

Intensity

Direction

Dynamism

PROPERTIES





Ideologies

Societalnorms

Governmentpolicies

Economictrends

• Biological, psychological, and social fluctuations inherent to BD

• Transitional experiences

• SMI linked to more frequent, extreme, irrevocable changes

!29




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism




Ideologies

Societalnorms

Governmentpolicies

Economictrends


Family Friends



Workplaces Schools


Healthinsurers

TEMPORALLAYER

TEMPORALLAYER


Valence

Intensity

Direction

Dynamism


Valence

Intensity

Direction

Dynamism


• Informatics artifacts and data representations of self resemble a relation

• Analog and digital media facilitate engagement with proximal and peripheral layers

!30




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism




Ideologies

Societalnorms

Governmentpolicies

Economictrends


Family Friends



Workplaces Schools


Healthinsurers

TEMPORALLAYER

TEMPORALLAYER


Valence

Intensity

Direction

Dynamism


Valence

Intensity

Direction

Dynamism


!31

• Informatics artifacts and data representations of self resemble a relation

• Analog and digital media facilitate engagement with proximal and peripheral layers




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism




Ideologies

Societalnorms

Governmentpolicies

Economictrends

INFORMATICS LAYERRelational & mediating roles of personal data

TEMPORALLAYER

TEMPORAL


LAYER


Workplaces Schools


Healthinsurers

Person with SMI


Family Friends


• Richer conceptualization compared to EST’s mesosystem

!32




Person with SMI

Ideologies

Workplaces Schools

Family Friends

TEMPORAL


LAYER

INFORMATICS LAYER


Healthinsurers

Care Supportgroups

Societalnorms

Governmentpolicies

Economictrends

givers

Valence

Intensity

Direction

Dynamism




Ideologies

Societalnorms

Governmentpolicies

Economictrends

INFORMATICS LAYERRelational & mediating roles of personal data

TEMPORALLAYER

TEMPORAL


LAYER


Workplaces Schools


Healthinsurers

Person with SMI


Family Friends


• Richer conceptualization compared to EST’s mesosystem

!33

Deeply supportive - moderately supportive - neutral/absent - irritating - abusive

Valence: positivity/negativity of a relationship

Intensity: weak/strength of a relation’s influenceTight during moments of crisis, relaxed during stable periods

Direction: who is impacting or being impactedUni-, bi-, or multi-directional influence on and of SMI at micro to macro levels

Dynamism: (in)stability of a relationshipFrom lifelong friends or entrenched cultural norms to employment turnover

!34






!35






!36






!37

!38

Designing new generations of tools that support the social ecologies of use

!39

•Accommodate accruing, breaking, and changing social ties

•Normative data representations can fuel scrutiny and inadequacy

•Self-tracking is about crisis mitigation and crisis management

!40

!41




!42




Advancing an emerging class of collective informatics systems

that support the social ecologies of long-term mental health management

Thank you! Questions?

Personal Informatics in Interpersonal Contexts: Towards the Design of Technology that Supports the Social Ecologies of Long-Term Mental Health Management

Elizabeth Murnane, Tara Walker, Beck Tench, Stephen Voida, Jaime Snyder

Documents

Personal Informatics in Interpersonal Contextsstanford.edu/~emurnane/files/CSCW18_Ecology_Slides.pdfPersonal Informatics in Interpersonal Contexts: Towards the Design of Technology