Table 2.

Examples of patient engagement across the different studies

ID	Study Title	Who Were Patients/Caregivers?	How Were they Identified/Selected?	How Many Patients Were on Council?	How Did Investigators Interact with Patients?	What Were the Patients’ Specific Responsibilities?	Were There Any Changes over Time in Their Roles?	Who Were Other Stakeholders?
1	Shared Decision Making and Renal Supportive Care (SDMRSC)	Patients undergoing hemodialysis and families of patients.	Referred by social workers or clinicians.	12	Initially monthly, then quarterly.	Reply to the queries from investigators and partner in development of study goals, methodology and dissemination plan.	They were most involved in the planning process, but remain important sources of input.	Representatives from dialysis provider organizations, hospices, nephrologists, and dialysis social workers.
2	NephCure Kidney Network for Patients with Nephrotic Syndrome (NKN)	Adult patients and parents of minors with primary nephrotic syndrome (n=6) and patient advocates (n=4).	Call for nominations through advocacy organization’s website.	10	Weekly e-digest; monthly steering committee calls; monthly workgroup calls.	Codevelop policies, operational plans; aid in implementation (peer-to-peer recruitment); review ancillary research projects; aid in communications and dissemination.	Roles did not change, but degree of involvement did. Originally, Steering Committee members also were required to be on ≥1 workgroup, modified approach to route interested patients to different roles (governance versus implementation).	Practicing clinicians (n=3), researchers (n=3), representatives from industry (n=2).
3	Improving Patient Quality of Life and Caregiver Burden by a Peer-Mentoring Program for patients with CKD and Their Caregivers	Patients with CKD (stage 4 or 5) and caregivers.	Referred by social workers or clinicians.	5	Initially in focus group setting (for proposal review); during conduct of the study, within the context of periodic meetings.	Review the proposal; serve as members of the community advisory board (oversight of conduct of study) and members of the Patient and Caregiver Advisory Group.	No	Representatives of patient advocacy organization; clinicians; representatives of hospital administration; representatives of healthcare organizations.
4	PCMH-KD Health System Intervention	Patients with ESRD receiving hemodialysis at one of two outpatient dialysis facilities and their caregiver/family member.	Patients and caregivers recommended and/or who volunteered.	Varied quarterly, ranging from 4–7 per session.	Stakeholder groups led by a trained facilitator 3–4 times per year.	Stakeholder discussion group participants shared experiences during the moderated discussions, reviewed study protocol documents, met with Project Coordinator, and suggested format changes for the discussion group.	Modified format of discussion groups to obtain feedback to report to dialysis center management.	Clinicians, representatives of dialysis center, and Service Chief.
Patient representative met with the study team on an ad hoc and regular basis.
5	ASCEND Trial	Patients from included dialysis facilities and national advocacy organizations for patients with kidney disease.	Study leadership reached out to national organizations and patients in target dialysis facilities.	9	Patient council phone calls, facilitated by one of study PIs, and one of the patients served as the head of the council.	Partner in development of study goals, methodology, and dissemination plan; provide input on the patient’s perspective of each arm of the intervention; input from patient ambassadors through online surveys.	Council was most active in the design phase of the trial, then frequency of meetings decreased.	Representatives from Dialysis Provider Organizations, NIDDK, Council of Nephrology Social Workers, American Nephrology Nurses Association, National Renal Administrators Association.
6	Zuni Health Initiative – Home-Based Kidney Care	Patients are from the community of Zuni Pueblo.	Tribal governor and his council members, leaders from community as part of TAP and Zuni IHS clinician.	Zuni Governor and his council (9 members). TAP includes 5 community stakeholders	Group sessions with patients every 3 months.	Patient preferences in kidney care: compliant to lifestyle changes; exercise and nutritional regimen and adherence to prescribed medicine.	None	Zuni Tribal Governor and his council; TAP; Zuni IHS hospital; Zuni wellness Program; NIDDK Phoenix; ECHO program.
7	EPOCH-RRT	Patients and family members	From target study population with age, sex, occupational, and racial diversity in the panel	9	Regular meetings conference calls, and email with patient advisory council.	Served as a key component to inform the research and provide constructive feedback to the design and utility of study materials. Helped train interviewers.	None	Health care providers.

ID, identification; PCMH-KD, Bringing Care to Patients: Patient-Centered Medical Home for Kidney Disease; ASCEND, A Trial of Sertraline vs. CBT for End-stage Renal Disease Patients With Depression; PI, primary investigator(s); NIDDK, National Institute of Diabetes & Digestive & Kidney Diseases; TAP, tribal advisory panel; IHS, Indian Health Services; ECHO, Extension for Community Healthcare Outcomes; EPOCH-RRT, Empowering Patients on Choices for Renal Replacement Therapy.