Engaging hard-to-reach patients in patient-centered outcomes research. (May 2013)

• Record Type: Journal Article
• Authors: Kauffman, Karen S; dosReis, Susan; Ross, Melissa; Barnet, Beth; Onukwugha, Eberechukwu; Mullins, C Daniel
• Is Part Of: Journal of comparative effectiveness research. Volume 2:Number 3(2013)
• Page Start: 313
• Page End: 324
• Publication Date: 2013-05
• Subjects: African–American -- comparative effectiveness research -- minority -- patient-centered outcomes research; Medical care -- Research -- Periodicals; Medical care -- Research -- Evaluation -- Periodicals; Medical care -- Decision making -- Periodicals; Evidence-based medicine -- Periodicals; Medicine, Comparative -- Periodicals; 362.1072
• DOI: 10.2217/cer.13.11
• Languages: English
• ISSNs: 2042-6305

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.