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Closer to real life: Using experience sampling method (ESM) in health care research SCHP BERNE 11-12.03.2014 PIHET, Sandrine EICHER, Manuela 12.03.2014

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Page 1: Closer to real life: Using experience sampling method (ESM ... · PDF fileCloser to real life: Using experience sampling method (ESM) in health care research SCHP BERNE 11-12.03.2014

Closer to real life: Using experience sampling method (ESM) in health care research

SCHP BERNE 11-12.03.2014

PIHET, Sandrine

EICHER, Manuela

12.03.2014

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OVERVIEW

1. What is ESM?

2. Domains of application & examples of ESM studies in

health care

3. Example: Towards an application of ESM in acute cancer

care

4. Brainstorming: possible use of ESM by participants

5. Methodological and ethical challenges in ESM

6. Technical solutions: example of IT use to support ESM

7. Participants feed-back on challenges and IT use in ESM

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1. Closer to real life… but what is ESM?

SCHP BERNE 11-12.03.2014

PIHET, Sandrine

12.03.2014

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IN REAL LIFE AND REAL TIME

ESM study people in their natural environment, as they go about their usual activities (real life).

In ESM, participants provide repeated real-time (or close-in-time) reports about their experience, behaviour, etc. as it naturally unfolds in its context.

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THE ESM «FAMILY»

Experience Sampling Methods (ESM)

Ecological Momentary Assessment

Real-time data capture, microlongitudinal design

Ambulatory assessment

Self-monitoring

e-Diary studies

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WHAT IS ESM BEST SUITED FOR?

Rare and private behaviors

Subjective experience

Processes

Context, time & intervention effects

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ESM VARIANTS (1)

Ongoing experiences (pain, stress, well-being, symptom intensity, HR…)

High-frequency and/or low saillance events

(tremor, nails biting…)

Discrete events (taking medication, seizure, fall,

headache, substance use, receiving support, using a specific

strategy…)

Time sampling or Event sampling

bip

bip

bip

bip

bip

bip

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ESM VARIANTS (2)

Computerized

Easy and quick conception Easy use

Reponses can be readily accessed

Flexible presentation Compliance can be controlled

No access to previous answers

Easy data transfer

Paper-pencil

or

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ESM VARIANTS (3)

Time frame

High - rapid changes / frequent event Low - slow changes / rare event

Frequency

Duration

Short - minimizes retrospection bias Long - covers the stream of experience

Short - frequent event Long - rare event

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ADVANTAGES OF ESM

Maximizes the ecological validity

Less recall bias than in one-point self-reports

Captures the interactions with the context

Unconscious processes may be explicit in data

Captures the natural time course

[Myin-Germeys et al., 2009; Trull & Ebner-Priemer, 2013; Pihet, 2014]

More accurate than external assessment

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2. Examples of ESM studies in health care research

SCHP BERNE 11-12.03.2014

PIHET, Sandrine

EICHER, Manuela

12.03.2014

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OVERVIEW

• Health care practitioners’ experience in daily life

• Stress / «Flow» / Work-family balance

• Patient / natural helpers experience in daily life

• Symptoms / treatment consequences / management

• Processes

• Temporal patterns of treatment consequences

• Individual high-risk situations

• Patients at high risk for suboptimal evolution

• Processes leading to non-adherence

• Effect of light on infants’ circadian rythm

• Efficacy of interventions

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2.1. ESM studies about the experience and behaviour of health care practitioners

SCHP BERNE 11-12.03.2014

PIHET, Sandrine

12.03.2014

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EXPERIENCE / BEHAVIOR OF HCP

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EXPERIENCE / BEHAVIOR OF HCP

What are the core activities of nurses, and the

conditions under which they are performed?

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EXPERIENCE / BEHAVIOR OF HCP

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EXPERIENCE / BEHAVIOR OF HCP

What

contributes

the most to

nurses’

stress?

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EXPERIENCE / BEHAVIOR OF HCP

How much

flow do

nurses

experience

during work,

and when?

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EXPERIENCE / BEHAVIOR OF HCP

And how much flow

do students

experience?

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EXPERIENCE / BEHAVIOR OF HCP

How do nurses

experience the

work-family

balance?

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2.2. ESM studies about the experience of patients and natural helpers

SCHP BERNE 11-12.03.2014

PIHET, Sandrine

12.03.2014

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EXPERIENCE OF PATIENTS

Do patients

with

schizophrenia

really

experience

«flat affect»?

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EXPERIENCE OF NATURAL HELPERS

How much

stressed are

dementia

caregivers?

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EXPERIENCE OF PATIENTS

Which treatment

consequences do

patients

experience, and

how do they

manage them?

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2.3. ESM studies about processes

SCHP BERNE 11-12.03.2014

PIHET, Sandrine

12.03.2014

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PROCESSES When do patients

experience the

strongest

treatment

consequences?

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PROCESSES

What are the

high-risk

situations for

a specific

patient?

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PROCESSES

Which

patients are

at high-risk

for

suboptimal

evolution?

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PROCESSES Which processes lead to

non-adherence?

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PROCESSES

Does light

exposure

affect the

circadian

rythm of

infants?

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2.4. ESM studies about the efficacy of intervention

SCHP BERNE 11-12.03.2014

PIHET, Sandrine

12.03.2014

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EFFICACY OF INTERVENTIONS

Can Nemexin

help reduce

problematic

alcohol use?

A RCT

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EFFICACY OF INTERVENTIONS

Can Nemexin

help reduce

problematic

alcohol use?

A RCT

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3. Example: Towards and application

of ESM in acute cancer care

SCHP BERNE 11-12.03.2014

EICHER, Manuela

12.03.2014

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EXAMPLE: EU-PROJECT ASYMS

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EXAMPLE: RESIL-TRIAL

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RESIL-SHEET: FEED-BACK RESILIENZ

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RESIL-SHEET: PROTOTYP

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4. Brainstorming: possible use

of ESM

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5. Methodological challenges in ESM studies

SCHP BERNE 11-12.03.2014

PIHET, Sandrine

12.03.2014

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REACTIVITY IN ESM

Can the participation in an ESM protocol modify the variables of interest?

In most cases it won’t.

[Barta, Tennen & Litt, 2012]

Should be documented/assessed.

May occur when 1) only one target outcome is measured, 2) it is associated with a high motivation to change, and 3) changes are reinforced.

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COMPLIANCE IN ESM

An average of ±80% is required.

To ensure representativity of the measures.

Some statistical methods (multilevel) integrate this information.

Can be achieved through thoughtful choice of the ESM strategy (participant burden) and pilot work in the specific population.

[Myin-Germeys et al., 2009]

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5. Ethical challenges in ESM studies

SCHP BERNE 11-12.03.2014

EICHER, Manuela

12.03.2014

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INFORMED CONSENT: ANTICIPATE INFORMATION NEED

ESM could be experienced as potentially voyeuristic / intrusive, therefore participants need information:

What specific data are being collected

What data will be used for

How data will be protected and not linked to individuals

Discuss the limits of confidentiality

[Trull, T. & Ebner-Priemer, U. (2013): Ambulatory Assessment. Annu. Rev. Clin. Psychol 9:151-176]

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PRIVACY

Possible ways to support privacy:

• Use password-protected devices and protocols

• Use data-encryption and secure server to house data

More complex issues that need individual preparation:

• How disclose data collected passively (e.g. through body sensors) if health problems are implicated?

• How prevent risk exposure in case an acute crisis (suicidality)or emergency (stroke) happens?

• How to protect data that might indicate illegal activity (under age drinking; illegal substance abuse)?

[Trull, T. & Ebner-Priemer, U. (2013): Ambulatory Assessment. Annu. Rev. Clin. Psychol 9:151-176]

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6. RESIL – TRIAL …a technical perspective

SCHP BERNE 11-12.03.2014

CARRINO, Francesco

12.03.2014

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SOME INTRODUCTIONS

• Francesco Carrino, PhD student

• Physiological signals

• Human-Computer Interaction

• University of Applied Science, Fribourg

• HumanTech institute

• Advanced Interfaces and Smart Spaces

• Data Science, Content Technologies and Bioinformatics

• iHum@n Well-being

12/03/14 48

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OUTLINE

• RESIL Project

• Motivations

• Goals (technical POV)

• Our proposition

• System architecture

• Application overview:

• Video demonstration

• Conclusion

• Q&A + Live Demonstration

12/03/14 Francesco Carrino - PhD Student 49

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Francesco Carrino - PhD Student 50

RESIL – TRIAL: MOTIVATIONS

RESIL Study

The aim of the study is to test by feasibility and efficacy of two interventions with different intensities of support to enhance

resilience in patients and thereby to reduce their unmet supportive care needs

• “Technical” motivations:

• Provide technological support during the trials

• Helping in collecting data

• Easy data transfer

12/03/14

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RESIL – TRIAL: GOALS

• Goals:

• Interface:

• Adapted to elderly people

• Users in “stress” conditions

• Independent from the technology

• iOS, Android, PC, Mac, Linux…

• Respectful of the “paper” version

• Secure

• Anonymous

• Personal data treatment

• Possibility of exporting data in a “friendly” format

12/03/14 Francesco Carrino - PhD Student 51

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RESIL – TRIAL: OUR PROPOSITION

System architecture

An authenticated user accedes to a web application running in a server (somewhere) with behind a database storing the

information

• All the communications are encrypted and secured

• The devices are secured

• Here come the problems! 52

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RESIL – TRIAL: OUR PROPOSITION

System architecture

• Need to integrate the new application in an existing system

• Usually the system is very constrained (for security reason)

• Usually the system is old! (also for security reason)

• Therefore: we need to adapt the new system to the existing infrastructure

• Moral of the story: Nothing is impossible… …but everything is time consuming!

53

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RESIL – TRIAL: OUR PROPOSITION

• Homepage (only for the nurses’ eyes):

12/03/14 Francesco Carrino - PhD Student 54

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12/03/14 Francesco Carrino - PhD Student 55

RESIL – TRIAL: OUR PROPOSITION

• Patients Manager (only for the nurses’ eyes):

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12/03/14 Francesco Carrino - PhD Student 56

RESIL – TRIAL: OUR PROPOSITION

• Survey (tablet in the patient hand):

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12/03/14 Francesco Carrino - PhD Student 57

RESIL – TRIAL: OUR PROPOSITION

• Monitoring Sheet:

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12/03/14 Francesco Carrino - PhD Student 58

RESIL – TRIAL: OUR PROPOSITION

• DEMO

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RESIL – TRIAL: CONCLUSION

• Conclusions

• New technologies can help researchers to run ESM studies providing new tools and approaches

• People (i.e., therapists & patients) have more and more the habit to use new technologies.

• Contacts:

E-mail:

[email protected]

[email protected]

Tel number: 026 429 67 45

Personal web site: http://francesc.carrino.home.hefr.ch/

Video demonstration: http://youtu.be/wZW0CJCjpVc 59

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Haute école de santé Fribourg | Hochschule für Gesundheit Freiburg

Rte des Cliniques 15, 1700 Fribourg/Freiburg

Tél. 026 429 6000 | [email protected]

www.heds-fr.ch

Merci de votre attention!