A scoping review of methods to measure and evaluate citizen engagement in health research

Shahid, Anmol; Lalani, Inara N.; Rosgen, Brianna K.; Sept, Bonnie G.; Longmore, Shelly; Parsons Leigh, Jeanna; Stelfox, Henry T.; Fiest, Kirsten M.

doi:10.1186/s40900-022-00405-2

Research Involvement and Engagement

Table 1 Characteristics of the included literature (n = 33)

From: A scoping review of methods to measure and evaluate citizen engagement in health research

References	Country	Research area	Citizen engagement terminology	Citizen engagement activities	Types of citizens engaged	Stated goal
Abelson et al. [69]	Canada	Health services research	Public and patient engagement	General engagement	Public and patients	Evaluation
Abma et al. [41]	Netherlands	Health research	Patient involvement	Priority-setting	Patients	Evaluation
Archana et al. [54]	Nepal	Cardiovascular disease research	Stakeholder engagement	Inform	Patients and caregivers	Evaluation
Payne et al. [57]	Australia	Health services research	Consumer and community participation	Participation, consultation	Consumers, community representatives	Evaluation
Arora et al. [66]	USA	Health research	Community based participatory research	General engagement	Community partners	Measurement
Boivin et al. [64]	Canada	Health research	Patient and public engagement	General engagement	Patients, public	Evaluation
Boote et al. [44]	UK	Health research	Public Involvement	Grant development	Patients, patient representatives	Both
*Brady et al. [38]	UK	Health research	Public Involvement	Advisory board	Young people (children)	Evaluation
Brutt et al. [45]	Germany	Health research	Patient involvement	Study design	Patients	Both
Costello et al. [39]	Ireland	Pediatric Rheumatology	Patient and public involvement	Advisory board	Young patients (aged 10–20 years)	Evaluation
Crossing et al. [63]	Australia	Oncology	Consumer involvement	Research decision-making	People affected by cancer	Evaluation
Gibson et al. [58]	UK	Health services research	Patient and public involvement	Consultation	People with mental illness experience, disabled children, public	Evaluation
Giebel et al. [53]	UK	Health services research	Patient and public involvement	Dissemination, co-production	Older citizens, mental health patients	Evaluation
Greenhalgh et al. [42]	UK	Health research	Public involvement	Priority-setting, proposal development, study design and conduct, reporting, dissemination	Patients, public	Evaluation
Greer et al. [60]	Canada	Drug use	Community-based participatory research	Co-research, data collection	Peer leaders	Both
Hanley et al. [51]	UK	Health research	Consumer involvement	Priority-setting, study conduct, dissemination	Citizens	Measurement
Howe et al. [43]	UK	Primary care	Public Involvement	Proposal creation, study materials development, steering group	Volunteer citizens	Evaluation
Jewell et al. [61]	UK	Mental health	Patient and public involvement	Advisory board	People with mental illness experience	Evaluation
Johnson et al. [46]	UK	Palliative care	Public Involvement	Co-production, protocol development and study design, ethics application, interpretation, dissemination	Institute public members	Evaluation
Joosten et al. [68]	USA	Translational medicine	Community engagement	General engagement	Members of the public	Both
Lindenmeyer et al. [40]	UK	Diabetes, health services research	Consumer involvement	Priority-setting, decision-making, study conduct, analysis, dissemination, advisory/steering groups	People living with diabetes	Evaluation
Maccarthy et al. [59]	Ireland	Basic and preclinical health research	Patient and public involvement	Consultation, evaluation	People living with rheumatic disease	Both
Meyrick et al. [62]	UK	Sexual health	Patient and public involvement	General engagement	Unspecified	Measurement
Morrow et al. [67]	UK	Health research	Service user involvement	General engagement	Service users	Measurement
Oliver et al. [55]	UK	Health services research	Public Involvement	Collaboration, consultation	Unspecified	Both
Pelletier et al. [65]	Canada	Health research—physical activity	Patient and public engagement	Priority-setting	Community partners	Evaluation
Seeralan et al. [49]	Germany	Primary care	Patient and public involvement	Study materials development	Patients with depression history	Evaluation
†Shikako-Thomas et al. [52]	Canada	Pediatric neurology	Patient engagement	Priority-setting, data collection and analysis, interpretation, dissemination	CHILD-BRIGHT stakeholders	Evaluation
Stocks et al. [47]	UK	Primary care	Patient and public involvement	Study administration, document review, design own projects	Public group interested in research	Evaluation
Vat et al. [50]	Canada	Health research	Patient engagement	Study materials development, evaluation, data interpretation, dissemination, co-application	Patients	Measurement
Warner et al. [37]	Sweden	Mental health	Patient and public involvement	Protocol development	Refugee advisors	Evaluation
Wright et al. [56]	UK	Health research	User involvement	Consultation, collaboration, user-control	Service users	Both
Wyatt [48]	UK	Primary care, health services	Consumer involvement	Co-applicants, study conduct, study design	Service-users, carers	Both

*Report commissioned by a government organization
^†Conference proceeding

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