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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
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
1. Closer to real life… but what is ESM?
SCHP BERNE 11-12.03.2014
PIHET, Sandrine
12.03.2014
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.
THE ESM «FAMILY»
Experience Sampling Methods (ESM)
Ecological Momentary Assessment
Real-time data capture, microlongitudinal design
Ambulatory assessment
Self-monitoring
e-Diary studies
WHAT IS ESM BEST SUITED FOR?
Rare and private behaviors
Subjective experience
Processes
Context, time & intervention effects
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
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
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
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
2. Examples of ESM studies in health care research
SCHP BERNE 11-12.03.2014
PIHET, Sandrine
EICHER, Manuela
12.03.2014
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
2.1. ESM studies about the experience and behaviour of health care practitioners
SCHP BERNE 11-12.03.2014
PIHET, Sandrine
12.03.2014
EXPERIENCE / BEHAVIOR OF HCP
EXPERIENCE / BEHAVIOR OF HCP
What are the core activities of nurses, and the
conditions under which they are performed?
EXPERIENCE / BEHAVIOR OF HCP
EXPERIENCE / BEHAVIOR OF HCP
What
contributes
the most to
nurses’
stress?
EXPERIENCE / BEHAVIOR OF HCP
How much
flow do
nurses
experience
during work,
and when?
EXPERIENCE / BEHAVIOR OF HCP
And how much flow
do students
experience?
EXPERIENCE / BEHAVIOR OF HCP
How do nurses
experience the
work-family
balance?
2.2. ESM studies about the experience of patients and natural helpers
SCHP BERNE 11-12.03.2014
PIHET, Sandrine
12.03.2014
EXPERIENCE OF PATIENTS
Do patients
with
schizophrenia
really
experience
«flat affect»?
EXPERIENCE OF NATURAL HELPERS
How much
stressed are
dementia
caregivers?
EXPERIENCE OF PATIENTS
Which treatment
consequences do
patients
experience, and
how do they
manage them?
2.3. ESM studies about processes
SCHP BERNE 11-12.03.2014
PIHET, Sandrine
12.03.2014
PROCESSES When do patients
experience the
strongest
treatment
consequences?
PROCESSES
What are the
high-risk
situations for
a specific
patient?
PROCESSES
Which
patients are
at high-risk
for
suboptimal
evolution?
PROCESSES Which processes lead to
non-adherence?
PROCESSES
Does light
exposure
affect the
circadian
rythm of
infants?
2.4. ESM studies about the efficacy of intervention
SCHP BERNE 11-12.03.2014
PIHET, Sandrine
12.03.2014
EFFICACY OF INTERVENTIONS
Can Nemexin
help reduce
problematic
alcohol use?
A RCT
EFFICACY OF INTERVENTIONS
Can Nemexin
help reduce
problematic
alcohol use?
A RCT
3. Example: Towards and application
of ESM in acute cancer care
SCHP BERNE 11-12.03.2014
EICHER, Manuela
12.03.2014
EXAMPLE: EU-PROJECT ASYMS
EXAMPLE: RESIL-TRIAL
RESIL-SHEET: FEED-BACK RESILIENZ
RESIL-SHEET: PROTOTYP
4. Brainstorming: possible use
of ESM
5. Methodological challenges in ESM studies
SCHP BERNE 11-12.03.2014
PIHET, Sandrine
12.03.2014
METHODOLOGICAL CHALLENGES OF ESM
Demanding for the participants
Risk of reactivity
Compliance is required
[Myin-Germeys et al., 2009; Trull & Ebner-Priemer, 2013; Pihet, 2014]
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.
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]
5. Ethical challenges in ESM studies
SCHP BERNE 11-12.03.2014
EICHER, Manuela
12.03.2014
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]
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]
6. RESIL – TRIAL …a technical perspective
SCHP BERNE 11-12.03.2014
CARRINO, Francesco
12.03.2014
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
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
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
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
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
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
RESIL – TRIAL: OUR PROPOSITION
• Homepage (only for the nurses’ eyes):
12/03/14 Francesco Carrino - PhD Student 54
12/03/14 Francesco Carrino - PhD Student 55
RESIL – TRIAL: OUR PROPOSITION
• Patients Manager (only for the nurses’ eyes):
12/03/14 Francesco Carrino - PhD Student 56
RESIL – TRIAL: OUR PROPOSITION
• Survey (tablet in the patient hand):
12/03/14 Francesco Carrino - PhD Student 57
RESIL – TRIAL: OUR PROPOSITION
• Monitoring Sheet:
12/03/14 Francesco Carrino - PhD Student 58
RESIL – TRIAL: OUR PROPOSITION
• DEMO
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:
Tel number: 026 429 67 45
Personal web site: http://francesc.carrino.home.hefr.ch/
Video demonstration: http://youtu.be/wZW0CJCjpVc 59
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!