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Towards personalizing participation in health studies

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There is substantial evidence on the relevant factors that motivate participation in human subject studies and the expectations of participants when sharing their health data for research. However, most human subject studies focus on participant eligibility and data collection, omitting even a rudimentary use of the factors that motivate participation. We illustrate an approach to use motivation to construct personalized stories and exemplify it by using a chatbot under development towards monitoring, analyzing, and influencing health study participation, engagement, and retention. Additionally, we discuss the new advantages, challenges, and unexplored avenues for research stemming from our approach.

Cite this work in your research:
Vlad Manea, Mads Schnoor Hansen, Ece Elbeyi, Katarzyna Wac. Towards Personalizing Participation in Health Studies. Workshop on Multimedia for Personal Health and Health Care, HealthMedia 2019. In conjunction with the ACM International Conference on Multimedia, MM 2019, Nice, France.

Co-author. Presented by Semahat Ece Elbeyi, University of Copenhagen, Quality of Life Technologies Lab. Research funded by H2020 WellCo (769765). Workshop HealthMedia 2019 in conjunction with ACM MultiMedia 2019, Nice, France, October 2019.

Published in: Health & Medicine
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Towards personalizing participation in health studies

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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

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