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.
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.
Authors: Deanna M Kaplan; Heidi A Hamann; Sarah N Price; Timothy J Williamson; Elizabeth S Ver Hoeve; Mairead H McConnell; Jennifer E Duchschere; Linda L Garland; Jamie S Ostroff Journal: J Psychosoc Oncol Date: 2022-02-06
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