The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study.

Journal Article (Journal Article)

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: NCT02722382.

Full Text

Duke Authors

Cited Authors

  • Browne, T; Jones, S; Cabacungan, AN; Lang-Lindsey, K; Schmidt, L; Jackson, G; Schatell, D; Damron, KC; Ephraim, PL; Hill-Briggs, F; Bolden, S; Swoboda, A; Ruff, S; Danielson, P; Littlewood, D; Singer, D; Stewart, S; Vinson, B; Clynes, D; Green, JA; Strigo, TS; Boulware, LE

Published Date

  • April 2022

Published In

Volume / Issue

  • 37 / Suppl 1

Start / End Page

  • 64 - 72

PubMed ID

  • 35349019

Pubmed Central ID

  • PMC8960674

Electronic International Standard Serial Number (EISSN)

  • 1525-1497

Digital Object Identifier (DOI)

  • 10.1007/s11606-021-07077-w


  • eng

Conference Location

  • United States