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

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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

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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?

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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

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WHAT IS ESM BEST SUITED FOR?

Rare and private behaviors

Subjective experience

Processes

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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

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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

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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]

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2. Examples of ESM studies in

health care research

EICHER, Manuela

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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

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2.1. ESM studies about the

experience and behaviour of

health care practitioners

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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

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

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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

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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

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PROCESSES

When do patients

_{experience the}

strongest

treatment

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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

Does light

exposure

affect the

circadian

rythm of

infants?

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2.4. ESM studies about the

efficacy of intervention

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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

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4. Brainstorming: possible use

of ESM

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5. Methodological challenges in

ESM studies

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METHODOLOGICAL CHALLENGES OF ESM

Demanding for the participants

Risk of reactivity

Compliance is required

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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.

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5. Ethical challenges in ESM

studies

SCHP BERNE 11-12.03.2014 EICHER, Manuela

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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

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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

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OUTLINE

• RESIL Project

• Motivations

• Goals (technical POV) • Our proposition

• System architecture

• Application overview:

• Video demonstration • Conclusion

• Q&A + Live Demonstration

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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

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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

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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!

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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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• Homepage (only for the nurses’ eyes):

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12/03/14 Francesco Carrino - PhD Student ₅₅ RESIL – TRIAL: OUR PROPOSITION

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12/03/14 Francesco Carrino - PhD Student ₅₆ RESIL – TRIAL: OUR PROPOSITION

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12/03/14 Francesco Carrino - PhD Student ₅₇ RESIL – TRIAL: OUR PROPOSITION

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12/03/14 Francesco Carrino - PhD Student ₅₈ RESIL – TRIAL: OUR PROPOSITION

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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]

Tel number: 026 429 67 45

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

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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