TY - JOUR
T1 - The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement
T2 - Insights from the PREPARE NOW Study
AU - Browne, Teri
AU - Jones, Shamika
AU - Cabacungan, Ashley N.
AU - Lang-Lindsey, Katina
AU - Schmidt, Lana
AU - Jackson, George
AU - Schatell, Dori
AU - Damron, Kelli Collins
AU - Ephraim, Patti L.
AU - Hill-Briggs, Felicia
AU - Bolden, Shakur
AU - Swoboda, Amy
AU - Ruff, Suzanne
AU - Danielson, Patty
AU - Littlewood, Diane
AU - Singer, Dale
AU - Stewart, Stephanie
AU - Vinson, Brandy
AU - Clynes, Diana
AU - Green, Jamie A.
AU - Strigo, Tara S.
AU - Boulware, L. Ebony
N1 - Publisher Copyright:
© 2021, The Author(s).
PY - 2022/4
Y1 - 2022/4
N2 - Background: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. Objective: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? Design: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants’ experiences with the impact of COVID-19 on research engagement. Participants: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. Approach: We used a content analysis approach and identified the main themes using an inductive process. Key Results: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. Conclusions: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. Trial Registration: Clinicaltrials.gov
AB - Background: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. Objective: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? Design: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants’ experiences with the impact of COVID-19 on research engagement. Participants: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. Approach: We used a content analysis approach and identified the main themes using an inductive process. Key Results: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. Conclusions: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. Trial Registration: Clinicaltrials.gov
KW - COVID-19
KW - PCORI
KW - kidney disease
KW - patient engagement
KW - patient-centered
KW - patient-centered outcomes research
UR - http://www.scopus.com/inward/record.url?scp=85127328505&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85127328505&partnerID=8YFLogxK
U2 - 10.1007/s11606-021-07077-w
DO - 10.1007/s11606-021-07077-w
M3 - Article
C2 - 35349019
AN - SCOPUS:85127328505
SN - 0884-8734
VL - 37
SP - 64
EP - 72
JO - Journal of general internal medicine
JF - Journal of general internal medicine
ER -