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  • Online Communities and Social Networks: Challenges, Opportunities, and Open

    Questions

    Annie T. Chen, PhD

    Assistant Professor

    Department of Biomedical Informatics and Medical Education

    University of Washington School of Medicine

    September 5, 2019

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Agenda

    • About My Research

    • Online Communities and Social Networks

    • Body Listening Project

    • Virtual Online Communities for Aging Life Experiences (VOCALE)

    • Conclusion and Opportunities for Collaboration

    2

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    About My Research

    Information and Knowledge in the Context of

    Chronic Conditions

    Research Methods

    Text and Visual

    Analytics

    Information and Knowledge in the Context of Chronic Conditions • Invisible Conditions • Complementary and Integrative

    Health (CIH) aka Complementary and Alternative Medicine (CAM)

    Particularly considering: • Health information quality • Social construction of illness • Knowledge representation and

    belief • Knowledge collaboration • Patient experience

    Text and Visual Analytics • Behavioral Health • Social Media • Digital Humanities

    3

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Online Communities and Social Networks

    Icon made by Freepik from www.flaticon.com

    4

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Online Communities

    • Social technologies are currently being used to connect people and share information about health across geographic boundaries and for a range of health-related issues

    • Some exist on generic platforms

    • Others are more focused on health

    5

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Benefits of Online Communities

    • Online communities present great opportunities for persons with health concerns, caregivers, and others to improve their health management

    • Empowering outcomes include1,2: – feeling informed

    – increased confidence with physicians

    – increased acceptance and optimism

    – enhanced social well-being

    `Bartlett, Y. K., & Coulson, N. S. (2011). An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Education and Counseling, 83(1), 113-119. 2van Uden-Kraan, C. F., Drossaert, C. H. C., Taal, E., Shaw, B. R., Seydel, E. R., & van de Laar, M. A. F. J. (2008c). Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qualitative Health Research, 18(3), 405-417.

    6

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Online Communities Can Provide Different Types of Support

    Types of support that we often see:

    • Informational support

    • emotional support

    • esteem support

    • network support

    • tangible assistance

    Cutrona, C. E., & Suhr, J. A. (1992). Controllability of stressful events and satisfaction with spouse support behaviors. Communication Research, 19(2), 154–174.

    7

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    The Role that Online Communities Can Play in Health Management

    • Patients share executable strategies1

    • Engage in collaborative problem solving1

    • People’s use of online communities, along with other information sources, can vary over the course of their condition2

    1Huh, J., & Ackerman, M. (2012). Collaborative Help in Chronic Disease Management: Supporting Individualized Problems. CSCW, 853–862. https://doi.org/10.1145/2145204.2145331 2Chen, A. T. (2016). The relationship between health management and information behavior over time: A study of the illness journeys of people living with fibromyalgia. Journal of Medical Internet Research, 18(10), e269. https://doi.org/10.2196/jmir.5309

    8

    https://doi.org/10.1145/2145204.2145331 https://doi.org/10.2196/jmir.5309

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    The Value of Information in Online Communities

    • Patients have a perspective that is different from clinicians and researchers1

    • Information from online communities can provide firsthand knowledge of experiences that are not yet well established in an existing body of knowledge

    • Patient narratives can be used to augment existing controlled vocabularies2

    1Hartzler, A., & Pratt, W. (2011). Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians. Journal of Medical Internet Research, 13(3). https://doi.org/10.2196/jmir.1728 2Doing-Harris, K. M., & Zeng-Treitler, Q. (2011). Computer-Assisted Update of a Consumer Health Vocabulary Through Mining of Social Network Data. Journal of Medical Internet Research, 13(2). https://doi.org/10.2196/jmir.1636

    9

    https://doi.org/10.2196/jmir.1728 https://doi.org/10.2196/jmir.1636

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Challenge and Open Question 1

    How do we facilitate engagement?

    • In recent years, there has been increased interest in engagement in digital behavioral change interventions1

    • These interventions can have a lot of different components… – Apps

    – Modules

    – Social networking components

    • How do you identify the active components?

    1Perski, O., Blandford, A., West, R., & Michie, S. (2017). Conceptualising engagement with digital behaviour change interventions: A systematic review using principles from critical interpretive synthesis. Translational Behavioral Medicine, 7(2), 254–267. https://doi.org/10.1007/s13142-016-0453-1

    10

    https://doi.org/10.1007/s13142-016-0453-1

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Challenge and Open Question 2

    • Patients can have negative encounters in online communities due to: – Information redundancy; lack of novelty1

    – Negativity1

    – Topic drift2

    • How do we assist patients to find the information that they need? – Employ computational means to aggregate information that is similar

    so that it is more easily retrievable1

    • How can we mitigate the occurrence of negative interactions in online communities?

    1Chen, A. T. (2015). Meaning, Information and Online Participation along the Illness Journey: The Story for Fibromyalgia Patients. Retrieved from https://cdr.lib.unc.edu/concern/dissertations/6t053g73g?locale=en 2Park, A., Hartzler, A. L., Huh, J., Hsieh, G., McDonald, D. W., & Pratt, W. (2016). “How Did We Get Here?”: Topic Drift in Online Health Discussions. Journal of Medical Internet Research, 18(11), e284. https://doi.org/10.2196/jmir.6297

    11

    https://cdr.lib.unc.edu/concern/dissertations/6t053g73g?locale=en

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Case Examples

    12

  • http://bodylisteningproject.org/ 13

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Background

    • Participatory platform to increase our knowledge of body listening and body awareness

    • Body awareness, defined as the ability to recognize subtle body cues, can be helpful in the management of many chronic conditions1

    • Self-management of chronic illness has been characterized as a dynamic and daily experience2

    • Three main categories of processes: focusing on illness needs, activating resources, and living with a chronic illness2

    • There is considerable research on self-management barriers and facilitators, the developmental patterns and sustainability of self- management over time are still unknown3

    1Mehling WE, Gopisetty V, Daubenmier J, Price CJ, Hecht FM, Stewart A. Body awareness: construct and self-report measures. PLoS One 2009;4(5):e5614. 2Schulman-Green D, Jaser S, Martin F, Alonzo A, Grey M, McCorkle R, et al. Processes of self-management in chronic illness. J Nurs Scholarsh 2012 Jun;44(2):136-144. 3Audulv Å. The over time development of chronic illness self-management patterns: a longitudinal qualitative study. BMC Public Health 2013 May 07;13:452.

    14

  • About Me

    Introduction

    Body Listening Project

    VOCALE

    Collaborations

    Participants

    • The study was open to anyone over the age of 21 years who was interested in, or wanted to contribute to, knowledge on the phenomenon of “body listening”

    • We targeted chronic conditions requiring self-care in which patients might share symptomatology, with a particular focus on chronic pain

    • These conditions included chro

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