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

Teri Browne; Shamika Jones; Ashley N Cabacungan; Katina Lang-Lindsey; Lana Schmidt; George Jackson; Dori Schatell; Kelli Collins Damron; Patti L Ephraim; Felicia Hill-Briggs; Shakur Bolden; Amy Swoboda; Suzanne Ruff; Patty Danielson; Diane Littlewood; Dale Singer; Stephanie Stewart; Brandy Vinson; Diana Clynes; Jamie A Green; Tara S Strigo; L Ebony Boulware

doi:10.1007/s11606-021-07077-w

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

J Gen Intern Med. 2022 Apr;37(Suppl 1):64-72. doi: 10.1007/s11606-021-07077-w. Epub 2022 Mar 29.

Authors

Teri Browne¹, Shamika Jones², Ashley N Cabacungan³, Katina Lang-Lindsey⁴, Lana Schmidt³, George Jackson^{3

5

6

7}, Dori Schatell⁸, Kelli Collins Damron⁹, Patti L Ephraim^{10

11}, Felicia Hill-Briggs¹², Shakur Bolden³, Amy Swoboda³, Suzanne Ruff³, Patty Danielson³, Diane Littlewood¹³, Dale Singer¹⁴, Stephanie Stewart¹⁵, Brandy Vinson¹⁶, Diana Clynes¹⁷, Jamie A Green^{18

19}, Tara S Strigo³, L Ebony Boulware²⁰

Affiliations

¹ College of Social Work, University of South Carolina, Columbia, SC, USA.
² Arnold School of Public Health, University of South Carolina, Columbia, SC, USA.
³ Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, USA.
⁴ Department of Social Work, Psychology & Counseling, Alabama A & M University, Normal, AL, USA.
⁵ Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
⁶ Department of Family Medicine and Community Health, Duke University School of Medicine, Durham, NC, USA.
⁷ Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT), Durham Veterans Affairs Health Care System, Durham, NC, USA.
⁸ Medical Education Institute, Inc., Madison, WI, USA.
⁹ National Kidney Foundation, New York, NY, USA.
¹⁰ Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
¹¹ Welch Center for Prevention, Epidemiology and Clinical Research, Baltimore, MD, USA.
¹² Division of General Internal Medicine, Johns Hopkins University, Baltimore, MD, USA.
¹³ The Care Centered Collaborative at The Pennsylvania Medical Society, Mechanicsburg, PA, USA.
¹⁴ Renal Physicians Association, Rockville, MD, USA.
¹⁵ Mayo Clinic Health System, Mankato, MN, USA.
¹⁶ Quality Insights Renal Network 5, Richmond, VA, USA.
¹⁷ American Association of Kidney Patients, Tampa, FL, USA.
¹⁸ Department of Nephrology, Geisinger Commonwealth School of Medicine, Danville, PA, USA.
¹⁹ Kidney Health Research Institute, Geisinger, Danville, PA, USA.
²⁰ Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, USA. ebony.boulware@duke.edu.

Abstract

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 NCT02722382.

Keywords: COVID-19; PCORI; kidney disease; patient engagement; patient-centered; patient-centered outcomes research.

Publication types

Clinical Study
Research Support, Non-U.S. Gov't

MeSH terms

COVID-19*
Delivery of Health Care
Family
Humans
Patient Outcome Assessment
Stakeholder Participation

Associated data

ClinicalTrials.gov/NCT02722382

Grants and funding

IHS-1409-20967/PCORI/Patient-Centered Outcomes Research Institute/United States