TY - JOUR
T1 - Engaging heart failure patients from a clinical data research network
T2 - A survey on willingness to participate in different types of research
AU - pSCANNER Team
AU - Choi, Yong K.
AU - López, Javier E.
AU - Meeker, Daniella
AU - Ohno-Machado, Lucila
AU - Kim, Katherine K.
PY - 2019/1/1
Y1 - 2019/1/1
N2 - The willing participation of patients in clinical research is a critical element in national efforts to collect health data for precision medicine and large cohort studies. However, recruiting patients is challenging. Clinical data research networks (CDRN) have primarily been used for observational studies, but may be able to enhance recruitment efforts. We need a better understanding of patient motivation and preferences for research participation and their interest in different types of research activities, particularly among those who are already represented in CDRNs. We surveyed a heart failure patient cohort constructed from EHRs in a CDRN to assess research participation. Results showed that CDRN recruitment is feasible. Respondents were most interested in completing a one-time survey and giving a blood sample one time. They were least interested in a study about weight control that require surgery. We found statistically significant associations between race and research activity interests.
AB - The willing participation of patients in clinical research is a critical element in national efforts to collect health data for precision medicine and large cohort studies. However, recruiting patients is challenging. Clinical data research networks (CDRN) have primarily been used for observational studies, but may be able to enhance recruitment efforts. We need a better understanding of patient motivation and preferences for research participation and their interest in different types of research activities, particularly among those who are already represented in CDRNs. We surveyed a heart failure patient cohort constructed from EHRs in a CDRN to assess research participation. Results showed that CDRN recruitment is feasible. Respondents were most interested in completing a one-time survey and giving a blood sample one time. They were least interested in a study about weight control that require surgery. We found statistically significant associations between race and research activity interests.
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M3 - Article
C2 - 32308823
AN - SCOPUS:85083755208
VL - 2019
SP - 305
EP - 312
JO - AMIA ... Annual Symposium proceedings / AMIA Symposium. AMIA Symposium
JF - AMIA ... Annual Symposium proceedings / AMIA Symposium. AMIA Symposium
SN - 1559-4076
ER -