title: Benefits and Risks in Secondary Use of Digitized Clinical Data: Views of Community Members Living in a Predominantly Ethnic Minority Urban Neighborhood.
abstract: BACKGROUND
  There is potential to increase the speed of scientific discovery and implement personalized health care by using digitized clinical data collected on the patient care experience. The use of these data in research raises concerns about the privacy and confidentiality of personal health information. This study explored community members' views on the secondary use of digitized clinical data to (1) recruit participants for clinical studies; (2) recruit family members of persons with an index condition for primary studies; and (3) conduct studies of information related to stored biospecimens.
  
  
  METHODS
  A qualitative descriptive design was used to examine the bioethical issues outlined from the perspective of urban-dwelling community members. Focus groups were used for data collection, and emergent content analysis was employed to organize and interpret the data.
  
  
  RESULTS
  Thirty community members attended one of four focus groups ranging in size from 4 to 11 participants. Five critical themes emerged from the focus-group material: (1) perceived motivators for research participation; (2) objective or "real-life" barriers to research participation; (3) a psychological component of uncertainty and mistrust; (4) preferred mechanisms for recruitment and participation; and (5) cultural characteristics that can impact understanding and willingness to engage in research.
  
  
  CONCLUSIONS
  The overriding concern of community members regarding research participation and/or secondary clinical and nonclinical use of digitized information was that their involvement would be safe and the outcome would be meaningful to them and to others. According to participants, biospecimens acquired during routine clinical visits or for research are no longer possessions of the participant. Although the loss of privacy was a concern for participants, they preferred that researchers access their personal health information using a digitized clinical file rather than through a paper-based medical record.
authors.affiliation: Columbia University School of Nursing.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Lucero
authors.affiliation: Columbia University School of Nursing.
authors.forename: Joan
authors.initials: J
authors.lastname: Kearney
authors.affiliation: Columbia University School of Nursing.
authors.forename: Yamnia
authors.initials: Y
authors.lastname: Cortes
authors.affiliation: Columbia University School of Nursing.
authors.forename: Adriana
authors.initials: A
authors.lastname: Arcia
authors.affiliation: Columbia University College of Physicians and Surgeons.
authors.forename: Paul
authors.initials: P
authors.lastname: Appelbaum
authors.affiliation: Columbia University College of Physicians and Surgeons.
authors.forename: Roberto Lewis
authors.initials: RL
authors.lastname: Fernández
authors.affiliation: Columbia University College of Physicians and Surgeons.
authors.forename: Jose
authors.initials: J
authors.lastname: Luchsinger
keywords: community–institutional relations; data sharing; genetic privacy; minority health; patient data privacy; research ethics