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

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.

journal_name

J Comp Eff Res

authors

Kauffman KS,Dosreis S,Ross M,Barnet B,Onukwugha E,Mullins CD

doi

10.2217/cer.13.11

subject

Has Abstract

pub_date

2013-05-01 00:00:00

pages

313-24

issue

3

eissn

2042-6305

issn

2042-6313

journal_volume

2

pub_type

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