title: Patient data access and online sleep apnea communities.
abstract: OBJECTIVE
  To show that some patients with sleep apnea on positive airway pressure therapy show an interest in obtaining further monitoring data with the support of online patient communities.
  
  
  METHODS
  A case study is presented in which a patient struggles to comply with his therapy and interacts with an online patient community. Next, a content analysis is described in which sleep apnea online communities are identified, an indexing language for patients' messages is developed, and patient messages are indexed into concepts from the indexing language.
  
  
  RESULTS
  The case study patient substantially benefits from the guidance of other online patients about obtaining and interpreting monitoring and treatment data. In the content analysis of online communities, patients spend more time discussing long-term management than any other top-level concept and particularly focus on the role of data in long-term management.
  
  
  CONCLUSIONS
  For certain patients, regularly accessing and interpreting their own detailed, monitoring data with support from other patients online seems important. Patients report that proprietary data formats from durable medical equipment manufacturers hinder patient access to their own data.
authors.affiliation: Department of Information Systems, University of Maryland, Baltimore County, Baltimore, Maryland 21228, USA. rada@umbc.edu
authors.forename: Roy
authors.initials: R
authors.lastname: Rada
mesh_terms: D006801:Humans; D020407:Internet; D008297:Male; D010353:Patient Education as Topic / Q000379:methods*; D010358:Patient Participation / Q000379:methods*; D012657:Self-Help Groups; D012891:Sleep Apnea Syndromes / Q000628:therapy*