Engaging hard-to-reach patients in patient-centered outcomes research

Karen S. Kauffman, Susan Dosreis, Melissa Ross, Beth Barnet, Eberechukwu Onukwugha, C. Daniel Mullins

Research output: Contribution to journalArticlepeer-review

Abstract

Aims: This study aimed to identify methods to engage hard-to-reach patients in the research process. Materials & methods: With funding from the Patient-Centered Outcomes Research Institute (Washington, DC, USA), the University of Maryland (MD, USA) conducted 20 focus groups and one individual interview. The sample consisted of six groups of hard-to-reach patients, two groups of healthcare providers who work with hard-to-reach patients and two groups of surrogates of hard-to-reach patients. Results & conclusion: In order to make patient-centered outcomes research more meaningful to patients and their caregivers, patient-centered outcomes research should be conducted with a focus on building and maintaining trust, which is achieved via pre-engagement with communities and continuous engagement of study participants and their communities.

Original languageEnglish (US)
Pages (from-to)313-324
Number of pages12
JournalJournal of Comparative Effectiveness Research
Volume2
Issue number3
DOIs
StatePublished - May 2013
Externally publishedYes

Keywords

  • African-American
  • comparative effectiveness research
  • minority
  • patient-centered outcomes research

ASJC Scopus subject areas

  • Health Policy

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