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 language | English (US) |
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Pages (from-to) | 313-324 |
Number of pages | 12 |
Journal | Journal of Comparative Effectiveness Research |
Volume | 2 |
Issue number | 3 |
DOIs | |
State | Published - May 2013 |
Externally published | Yes |
Keywords
- African-American
- comparative effectiveness research
- minority
- patient-centered outcomes research
ASJC Scopus subject areas
- Health Policy