title: Data collection challenges in community settings: insights from two field studies of patients with chronic disease.
abstract: OBJECTIVE
  Collecting information about health and disease directly from patients can be fruitfully accomplished using contextual approaches, ones that combine more and less structured methods in home and community settings. This paper's purpose was to describe and illustrate a framework of the challenges of contextual data collection.
  
  
  METHODS
  A framework is presented based on prior work in community-based participatory research and organizational science, comprised of ten types of challenges across four broader categories. Illustrations of challenges and suggestions for addressing them are drawn from two mixed method, contextual studies of patients with chronic disease in two regions of the USA.
  
  
  RESULTS
  The first major category of challenges was concerned with the researcher-participant partnership, for example, the initial lack of mutual trust and understanding between researchers, patients, and family members. The second category concerned patient characteristics such as cognitive limitations and a busy personal schedule that created barriers to successful data collection. The third concerned research logistics and procedures such as recruitment, travel distances, and compensation. The fourth concerned scientific quality and interpretation, including issues of validity, reliability, and combining data from multiple sources. The two illustrative studies faced both common and diverse research challenges and used many different strategies to address them.
  
  
  CONCLUSIONS
  Collecting less structured data from patients and others in the community is potentially very productive but requires the anticipation, avoidance, or negotiation of various challenges. Future work is necessary to better understand these challenges across different methods and settings, as well as to test and identify strategies to address them.
authors.affiliation: Department of BioHealth Informatics, Indiana University School of Informatics and Computing, Indiana University-Purdue University Indianapolis, Walker Plaza (WK), 719 Indiana Avenue, WK 319, Indianapolis, IN, 46202, USA, rjholden@iupui.edu.
authors.forename: Richard J
authors.initials: RJ
authors.lastname: Holden
authors.forename: Amanda M
authors.initials: AM
authors.lastname: McDougald Scott
authors.forename: Peter L T
authors.initials: PL
authors.lastname: Hoonakker
authors.forename: Ann S
authors.initials: AS
authors.lastname: Hundt
authors.forename: Pascale
authors.initials: P
authors.lastname: Carayon
mesh_terms: D000328:Adult; D002908:Chronic Disease; D055812:Community-Based Participatory Research / Q000379:methods*; D017144:Focus Groups; D006801:Humans; D008297:Male; D010358:Patient Participation; D011788:Quality of Life; D015203:Reproducibility of Results; D057566:Self Report