Engaging hard-to-reach patients in patient-centered outcomes research.
OBJECTIVE
This study aimed to identify methods to engage hard-to-reach patients in the research process.


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.


CONCLUSIONS
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.
University of Maryland School of Nursing, 655 West Lombard Street, Baltimore, MD 21201, USA.
Karen S
KS
Kauffman
Susan
S
Dosreis
Melissa
M
Ross
Beth
B
Barnet
Eberechukwu
E
Onukwugha
C Daniel
CD
Mullins
D015142:Baltimore; D017028:Caregivers; D003144:Communication Barriers; D003146:Communications Media / Q000706:statistics & numerical data; D032882:Comprehension; D003625:Data Collection; D003695:Delivery of Health Care / Q000458:organization & administration*; D030881:Disclosure; D005260:Female; D017144:Focus Groups; D006282:Health Personnel; D006801:Humans; D007258:Informed Consent; D008016:Life Change Events; D008297:Male; D008499:Medical Records; D054525:Minority Health; D010342:Patient Acceptance of Health Care; D010353:Patient Education as Topic; D063868:Patient Outcome Assessment; D017060:Patient Satisfaction; D018802:Patient-Centered Care / Q000458:organization & administration*; D011369:Professional-Patient Relations; D012944:Social Support; D012959:Socioeconomic Factors; D035502:Trust; D035862:Vulnerable Populations