title: Seeking and sharing: why the pulmonary fibrosis community engages the web 2.0 environment.
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.
authors.affiliation: Department of Community and Behavioral Health, Colorado School of Public Health and the Adult & Child Center for Health Outcomes Research and Delivery Science (ACCORDS), University of Colorado School of Medicine, CO University of Colorado Anschutz Medical Campus, Aurora, CO, USA. karen.albright@ucdenver.edu.|Department of Sociology and Criminology, University of Denver, Denver, CO, USA. karen.albright@ucdenver.edu.
authors.forename: Karen
authors.initials: K
authors.lastname: Albright
authors.affiliation: Department of Pediatric Infectious Disease, University of Colorado School of Medicine, Aurora, CO, USA. tarik.walker@ucdenver.edu.
authors.forename: Tarik
authors.initials: T
authors.lastname: Walker
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. msbaird49@comcast.net.
authors.forename: Susan
authors.initials: S
authors.lastname: Baird
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. LRERES@COMCAST.NET.
authors.forename: Linda
authors.initials: L
authors.lastname: Eres
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. farnswortht@njhealth.org.
authors.forename: Tara
authors.initials: T
authors.lastname: Farnsworth
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. fierk@njhealth.org.
authors.forename: Kaitlin
authors.initials: K
authors.lastname: Fier
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. Dolly@pfstrategies.org.|PF Strategies, LLC, Black Hawk, CO, USA. Dolly@pfstrategies.org.
authors.forename: Dolly
authors.initials: D
authors.lastname: Kervitsky
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. marjkorn@yahoo.com.
authors.forename: Marjorie
authors.initials: M
authors.lastname: Korn
authors.affiliation: Columbia University Medical Center, New York, NY, USA. dl427@columbia.edu.
authors.forename: David J
authors.initials: DJ
authors.lastname: Lederer
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. mccormickm1@comcast.net.
authors.forename: Mark
authors.initials: M
authors.lastname: McCormick
authors.affiliation: Kaiser Permanente, Aurora, CO, USA. John.F.Steiner@kp.org.
authors.forename: John F
authors.initials: JF
authors.lastname: Steiner
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. tvier@comcast.net.
authors.forename: Thomas
authors.initials: T
authors.lastname: Vierzba
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. wamboldtf@njhealth.org.
authors.forename: Frederick S
authors.initials: FS
authors.lastname: Wamboldt
authors.affiliation: Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. swigrisj@njc.org.|Interstitial Lung Disease Program, National Jewish Health, 1400 Jackson Street, Denver, CO, 80206, USA. swigrisj@njc.org.
authors.forename: Jeffrey J
authors.initials: JJ
authors.lastname: Swigris
mesh_terms: D006801:Humans; D033181:Information Dissemination; D057226:Information Seeking Behavior; D020407:Internet; D033262:Narration; D011658:Pulmonary Fibrosis; D036301:Qualitative Research; D061108:Social Media; D012944:Social Support