Towards personalizing participation in health studies

Vlad Manea
Vlad ManeaSenior software engineer, PhD at AudienceProject
Semahat Ece Elbeyi
PhD Fellow, Department of Arts and Cultural Studies, University of Copenhagen
ece.elbeyi@hum.ku.dk
Katarzyna Wac
Associate Professor, Institute of Service Science, University of Geneva
Associate Professor, Department of Computer Science, University of Copenhagen
katarzyna.wac@unige.ch / wac@di.ku.dk
Mads Schnoor Hansen
MSc Graduate, Department of Computer Science, University of Copenhagen
qdp777@alumni.ku.dk
Vlad Manea
PhD Fellow, Department of Computer Science, University of Copenhagen
manea@di.ku.dk
Towards Motivating Participation in Health Studies
Quality of Life Technologies Lab
www.qualityoflifetechnologies.com
Participant is typing...
University of Copenhagen
www.ku.dk/english
H2020 WellCo Project
wellco-project.eu
Purpose for Researching Participation Motivation
Community
Absent framework
for motivation assessment
Researchers
Decreased data quality
from and to the participants
Participants
Limited motivation
to participate in research
Conceptual Framework for Motivation Assessment
Motivation to
Participate
Personalized
Participation
Participation
Measurement
Psychological factors may
influence motivation to
participate in studies
Design personalized
expectations, journeys,
experiences, and results
Measure participation in
studies by using mixed
research methods
Feedback loop for continuous refinement
Concrete Steps Forward
Chatbot as
Research Artifact
Motivation Factors
for Participation
Personalized Stories
with Moments
Literature review indicated
preliminary clusters of
motivation factors
Helping participants sign up
for studies relevant for their
personal situations
Designing journeys which are
adapted to motivation
factors and situations
Motivation Factors
Motivation Factors
for Participation
Literature review indicated
preliminary clusters of
motivation factors
Helping others Personal benefits
Topic of study Method of study
Family
Friends
Acquaintances
Society
Health
Information
Reward
Social
Organ
Process
Behavior
Quality of Life
Delivery
Effort
Device
Data use
Chatbot as Artifact
Chatbot as
Artifact
Helping participants sign up
for studies relevant for their
personal situations
How much do you want to help others?
SleepActivity Stress Nutrition
How much do you want to gain personally?
How interested are you in the research topic?
How influenced by the administration of study?
Here are a few studies you may enjoy:
Study on Activity
Researchers - Ethics Approvals - Literature - ...
Helps you understand your physical activity.
Goal - Scope - Tasks - Data - Protocols - ...
Consent of Study - Please Sign.
Personalized Moments
Alice
Alice wants to help her
mother and assess her own
predisposition for diabetes
In this study, you help research help people like
Edna prevent Diabetes. See how.
Physical activity now helps us understand how
Diabetes onsets later in life. See how.
In this study, you helped research help people
like Edna prevent Diabetes. Thank you! 🙏
Your physical activity for the past week meets
the Finnish Diabetes Risk criteria! See how.
Questions relevant to assess physical activity
Alice’s Mom
Alice is typing...
Personalized Moments
Bob
Bob is wary of the security of
the information he shares
with the chatbot
This study will only collect de-identified,
summary information from your participation:
In this study, adult people with wearables help
research prevent Dementia. See how.
Questions relevant to assess physical activity
Your wearable and you → identity, wearable, and
answer data → summarization and removal of
identification → summary of data without your
identity → study. See how.
Thank you for participating in this study! 🙏
Bob is typing...
Personalized Moments
Charlie
Charlie only agrees to take
part in a study if it implies
financial rewards
Questions relevant to assess physical activity
You have gained 10 rewards for answering all
questions in this study. Thank you! 🙏
Answering each question below gives 1 reward.
Answering all questions gives 3 extra rewards.
In this study, we observe how physically active
students are during the academic year. See how.
Your physical activity for the past three weeks
meets the World Health Organization guidelines.
See how.
Charlie is typing...
Semahat Ece Elbeyi
PhD Fellow, Department of Arts and Cultural Studies, University of Copenhagen
ece.elbeyi@hum.ku.dk
Towards Motivating Participation in Health Studies
Attendee is preparing a question...
Thank you
Vlad Manea, Mads Schnoor Hansen, Semahat Ece Elbeyi, Katarzyna Wac
Workshop on Multimedia for Personal Health and Health Care 2019
This presentation is also available at: bit.ly/healthmedia2019
Quality of Life Technologies Lab
www.qualityoflifetechnologies.com
University of Copenhagen
www.ku.dk/english
H2020 WellCo Project
wellco-project.eu
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Towards personalizing participation in health studies

  • 1. Semahat Ece Elbeyi PhD Fellow, Department of Arts and Cultural Studies, University of Copenhagen ece.elbeyi@hum.ku.dk Katarzyna Wac Associate Professor, Institute of Service Science, University of Geneva Associate Professor, Department of Computer Science, University of Copenhagen katarzyna.wac@unige.ch / wac@di.ku.dk Mads Schnoor Hansen MSc Graduate, Department of Computer Science, University of Copenhagen qdp777@alumni.ku.dk Vlad Manea PhD Fellow, Department of Computer Science, University of Copenhagen manea@di.ku.dk Towards Motivating Participation in Health Studies Quality of Life Technologies Lab www.qualityoflifetechnologies.com Participant is typing... University of Copenhagen www.ku.dk/english H2020 WellCo Project wellco-project.eu
  • 2. Purpose for Researching Participation Motivation Community Absent framework for motivation assessment Researchers Decreased data quality from and to the participants Participants Limited motivation to participate in research
  • 3. Conceptual Framework for Motivation Assessment Motivation to Participate Personalized Participation Participation Measurement Psychological factors may influence motivation to participate in studies Design personalized expectations, journeys, experiences, and results Measure participation in studies by using mixed research methods Feedback loop for continuous refinement
  • 4. Concrete Steps Forward Chatbot as Research Artifact Motivation Factors for Participation Personalized Stories with Moments Literature review indicated preliminary clusters of motivation factors Helping participants sign up for studies relevant for their personal situations Designing journeys which are adapted to motivation factors and situations
  • 5. Motivation Factors Motivation Factors for Participation Literature review indicated preliminary clusters of motivation factors Helping others Personal benefits Topic of study Method of study Family Friends Acquaintances Society Health Information Reward Social Organ Process Behavior Quality of Life Delivery Effort Device Data use
  • 6. Chatbot as Artifact Chatbot as Artifact Helping participants sign up for studies relevant for their personal situations How much do you want to help others? SleepActivity Stress Nutrition How much do you want to gain personally? How interested are you in the research topic? How influenced by the administration of study? Here are a few studies you may enjoy: Study on Activity Researchers - Ethics Approvals - Literature - ... Helps you understand your physical activity. Goal - Scope - Tasks - Data - Protocols - ... Consent of Study - Please Sign.
  • 7. Personalized Moments Alice Alice wants to help her mother and assess her own predisposition for diabetes In this study, you help research help people like Edna prevent Diabetes. See how. Physical activity now helps us understand how Diabetes onsets later in life. See how. In this study, you helped research help people like Edna prevent Diabetes. Thank you! 🙏 Your physical activity for the past week meets the Finnish Diabetes Risk criteria! See how. Questions relevant to assess physical activity Alice’s Mom Alice is typing...
  • 8. Personalized Moments Bob Bob is wary of the security of the information he shares with the chatbot This study will only collect de-identified, summary information from your participation: In this study, adult people with wearables help research prevent Dementia. See how. Questions relevant to assess physical activity Your wearable and you → identity, wearable, and answer data → summarization and removal of identification → summary of data without your identity → study. See how. Thank you for participating in this study! 🙏 Bob is typing...
  • 9. Personalized Moments Charlie Charlie only agrees to take part in a study if it implies financial rewards Questions relevant to assess physical activity You have gained 10 rewards for answering all questions in this study. Thank you! 🙏 Answering each question below gives 1 reward. Answering all questions gives 3 extra rewards. In this study, we observe how physically active students are during the academic year. See how. Your physical activity for the past three weeks meets the World Health Organization guidelines. See how. Charlie is typing...
  • 10. Semahat Ece Elbeyi PhD Fellow, Department of Arts and Cultural Studies, University of Copenhagen ece.elbeyi@hum.ku.dk Towards Motivating Participation in Health Studies Attendee is preparing a question... Thank you Vlad Manea, Mads Schnoor Hansen, Semahat Ece Elbeyi, Katarzyna Wac Workshop on Multimedia for Personal Health and Health Care 2019 This presentation is also available at: bit.ly/healthmedia2019 Quality of Life Technologies Lab www.qualityoflifetechnologies.com University of Copenhagen www.ku.dk/english H2020 WellCo Project wellco-project.eu