Table 3:

Levels of patient and caregiver engagement in kidney research.

Approacha	Input	Level of Engagement	Examples
Inform	Receive information with limited opportunity to contribute and no decision-making power	Seminars/conferences Newsletters	• The ISPD Scientific Committee opened registration to the 17th Congress to all patients and their families [24] • The 2022 Annual Scientific Meeting of the Australian and New Zealand Society of Nephrology included a Consumer Session on Telehealth • Nutritional education sessions and written materials delivered to patients in haemodialysis clinics [94]
Consult	Provide personal perspectives, limited influence on decision making	Interviews Surveys Focus groups	• Patient surveys identified factors considered when making decisions about dialysis modality, and conditions likely to support increased rates of home dialysis [95] • Focus groups with patients and caregivers identified facilitators and barriers to self-management in peritoneal dialysis [90] • Focus groups identified patient and caregiver needs to support informed decision making in testing for ADPKD [96]
Involve	Provide personal perspectives as equal contributors	NGT	• Patients, caregivers, clinicians and policymakers involved in consensus workshop involving NGT to establish research priorities for patients with CKD not on dialysis [41] • Public involvement (characteristics not provided) in NGT to reach consensus for management of nocturia in primary care and in specialist clinics [97]
		Delphi process	• Patients, caregivers, researchers and health professionals were involved in developing consensus-based core outcome domains for trials in ADPKD [43] • Patients, caregivers, researchers and health professionals were involved in developing core outcome domains for trials in peritoneal dialysis [98]
		Consensus workshops	• Patients, researchers and health professionals met to establish a core outcome set for trials in peritoneal dialysis [44] • Patient partners, clinicians, researchers, regulators and funder representatives involved in developing definitions for clinical trial kidney failure outcomes and surrogates that predict progression to kidney failure [99]
Partner	Provide advice based on experiential knowledge	Steering Committee Advisory Group	• The development of an online patient decision aid for kidney failure treatment modality decisions was guided by a steering committee which included a patient advocate [100] • A trial investigating the use of an electronic patient-reported outcome measure in the management of patients with advanced CKD was guided by a patient advisory group and included patient partners in the trial management committee [101]
	Participate as full members of the research team, equal decision-making power	Co-investigator(s)	• Patients and caregivers were included as co-investigators on a project testing a health system intervention for patients with advanced CKD [63]
Empower	Lead, propose and drive research projects/agendas	Patient-led research network Lead investigator(s)	• A consumer-led consensus workshop to improve rural and remote patient experiences in accessing healthcare [22]

^aBased on Australian Department of Health Stakeholder Engagement Framework 2005 [80].

ADPKD: autosomal dominant polycystic kidney disease; ISPD: International Society for Peritoneal Dialysis.