Seeking and Sharing: Why the Pulmonary Fibrosis Community Engages the Web 2.0 Environment

Authors

Karen Albright, Adult and Child Consortium for Health Outcomes Research and Delivery Science, University of Colorado Anschutz Medical Campus, University of DenverFollow
Tarik Walker, University of Colorado School of Medicine
Susan Baird, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
Linda Eres, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
Tara Farnsworth, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
Kaitlin Fier, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
Dolly Kervitsky, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
Marjorie Korn, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
David J. Lederer, Columbia University Medical Center
Mark McCormick, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
John F. Steiner, Kaiser Permanente
Thomas Vierzba, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
Frederick S. Wamboldt, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health
Jeffrey J. Swigris, Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Interstitial Lung Disease Program, National Jewish Health

Publication Date

1-12-2016

Document Type

Article

Organizational Units

College of Arts Humanities and Social Sciences, Sociology and Criminology

Keywords

Pulmonary fibrosis (PF), Engagement, World Wide Web, Web 2.0, Reader-participants, PF-focused sites

Abstract

Background

Pulmonary fibrosis (PF) is a rare, progressive disease that affects patients and their loved ones on many levels. We sought to better understand the needs and interests of PF patients and their loved ones (collectively “reader-participants”) by systematically analyzing their engagement with the World Wide Web (the current version referred to as Web 2.0).

Methods

Data were collected from three PF-focused, interactive websites hosted by physician-investigators with expertise in PF. All data generated by reader-participants for approximately 10 months were downloaded and then analyzed using qualitative content analysis methods.

Results

PF experts posted 38 blog entries and reader-participants posted 40 forum entries. Blogs received 363 responses, and forum entries received 108 responses from reader-participants. Reader-participants primarily used the three websites to seek information from or offer a contribution to the PF community. Information was sought about PF symptoms, diagnosis, prognosis, treatments, research, pathophysiology, and disease origin; reader-participants also made requests for new posts and pleas for research and sought clarification on existing content. Contributions included personal narratives about experiences with PF, descriptions of activities or behaviors found to be helpful with PF symptoms, resources or information about PF, and supportive comments to other PF sufferers.

Conclusions

PF patients and their loved ones engage the Web 2.0 environment at these PF-focused sites to satisfy their needs to better understand PF and its impacts and to support others facing similar challenges. Clinicians may find it beneficial to encourage PF patients’ involvement in internet forums that foster dynamic, bi-directional information sharing.

Publication Statement

Copyright held by author or publisher. User is responsible for all copyright compliance.

Recommended Citation

Albright, Karen, et al. “Seeking and Sharing: Why the Pulmonary Fibrosis Community Engages the Web 2.0 Environment.” BMC Pulmonary Medicine, vol. 16, no. 1, 2016, p. 4. doi: 10.1186/s12890-016-0167-7.