Ethical issues in patient-centered outcomes research and comparative effectiveness research: a pilot study of community dialogue

J Empir Res Hum Res Ethics. 2015 Feb;10(1):22-30. doi: 10.1177/1556264614568426. Epub 2015 Jan 13.

Abstract

Community bioethics dialogues were held on the topic of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). Participants were 65 and older and represented either a lower income, African American group (A) or a higher income White group (B). Participants were presented with a variety of background reading and study materials. Meetings were held 2 hr per week for 6 weeks. The groups showed both independence in judgment from the investigators and diversity of opinion between the two groups. Group B addressed more topics than Group A and in some instances explored additional policy nuances. Members of Group A appeared more cognizant of issues of social justice that affect vulnerable populations and appeared leery of approaches that suggested possible disrespect for their own personal experiences. Future plans call for both repeating the dialogue with additional, diverse community groups and repeating community bioethics dialogues on new topics with the same groups.

Keywords: community bioethics dialogue; comparative effectiveness research; patient-centered outcomes research.

Publication types

  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Aged
  • Attitude
  • Awareness*
  • Black or African American
  • Communication*
  • Community-Institutional Relations*
  • Comparative Effectiveness Research / ethics*
  • Ethics
  • Ethics, Research
  • Female
  • Humans
  • Income
  • Male
  • Patient Outcome Assessment*
  • Pilot Projects
  • Poverty
  • Residence Characteristics
  • Social Justice*
  • Vulnerable Populations*
  • White People