. 2020 May 19;98(2):493–553. doi: 10.1111/1468-0009.12458

Appendix Table 1.

Selected Measures of Community Engagement (Organized by Context, Process, or Outcome Evaluation Based on Study Authors’ Descriptions)

Instrument	Domains Measured	Definitions	Purpose of Measure	Number of Items	Validity/Reliability
*Selected Context Measures*
Community‐Based Participatory Research (CBPR) Skills and Training Needs ⁶¹	CBPR skill set CBPR training needs CBPR mentorship	Research, relationship building, community training [CBPR skill set] Interest in gaining additional skills/training related to CBPR [CBPR training needs] Willingness to mentor; interest in being mentored [CBPR mentorship]	Survey of research investigators’ skills, interest, and training needs in CBPR	20 closed‐ and open‐ended items	Piloted with academic medicine and public health faculty and then revised
Community Needs Assessment ⁵⁵	Primary target population that organization serves Health issues that current programming addresses Research and evaluation experience Interest in partnering and training	History and experience with research collaboration [Research and evaluation experience] Interest in learning about specific research topics; preference for learning format and structure [Interest in partnering and training]	Assessment of local community‐based organizations’ research needs	23 closed‐ and open‐ended items	–
Group Level Assessment ⁹⁷	Climate setting Generating Appreciating Reflecting Understanding Selecting Action	Building trust and encouraging participants to openly share what they know; icebreakers [Climate setting] Responding to project‐generated open‐ended prompts: “Our toughest problem to address is …” [Generating] Time to view the responses (collective data), discuss observations, and add additional comments [Appreciating] Initial observations/thoughts [Reflecting] Smaller group discussions of the responses; looking for common themes and analyzing the data [Understanding] Larger group discussion of themes; prioritization of themes by some voting/ranking process [Selecting] Smaller groups consider possible next steps/action plans for each prioritized theme [Action]	Formative evaluation method to assess needs and design a plan for future programs	7 participatory stages/activities	Implementation across more than 14 participatory evaluation settings
Community Priority Index ⁶²	Importance of issue Changeability of issue	Ratings of importance and ease of change of issues identified by partnership/related to topic of interest	Method to quantify priorities (for engaged project) across stakeholders	Varies; issues derived a priori or through community focus groups	–
Cultural Identity Inventory ⁹⁸	Cultural dimensions Manifestations Interactions Subordination Vantage point Connection to community practice	How does the participant identify across various cultural dimensions (eg, gender, race, sexual orientation, ability) [Cultural dimensions] Values, actions, or messages associated with the dimension [Manifestations] Intersectionalities; interactions with other dimensions [Interactions] Privileges afforded to member of dominant group; denials experienced by member of subordinate group [Subordination] Understanding of cultural aspect of oneself; how others see/view you [Vantage point] Strengths or challenges related to cultural identity and community practice [Connection to community practice]	Critical self‐reflection for community practitioners	8 domains for self‐reflection	–
Potential Partner Interview Guide ⁶⁶	Community background Interest in partnering Capacity/fit Resources Key community members/organizations Referrals/point of contacts	Previous work in community; changes wanted/needed for target population [Community background] Anticipated time for coalition activities [Capacity/fit] Identification of community leaders, organizations that provide services to target population [Key community members/organizations]	Assessment of community organization and their interest in partnering	6 open‐ended questions	–
Community Health Initiative Interview Guide ⁵⁸	Physical community assets Voluntary groups (associations) Paid groups (institutions) Economic assets Individual assets Community stories Communication	Neighborhood characteristics and trends; social connections; quality of life, safety, noise, city services [Physical community assets] Transportation; neighborhood/community associations; conflict management [Voluntary groups (associations)] Schools; locations to meet people and hang out; food locations; access to health care [Paid groups (institutions)] Sources of income, occupation, education, employment history, home ownership [Economic assets] Other personal skills; contact with political representatives; dependability of members of neighborhood [Individual assets] Stories about people/places around here; important events in location [Community stories] News sources; how news travels; most reliable source; first to know; health information [Communication]	Community assets assessment when initiating an academic‐community partnership	107 open‐ended questions	Interview guide refined and revised through community partner input and interviewing role‐play
*Selected Context and Process Measures*
Partnerships in Social Determinants of Health Interview Guide ⁴⁵	Process for targeting social determinant of health (SDH) Community context Facilitators Barriers Shared power and influence	How did partners decide the specific SDH was meaningful to the partnering community? [Community context] Was the specific SDH of great importance and concern to the partnering community before working on this project?	Evaluation of academic‐community partnership processes Targeting SDH	8 open‐ended questions	–
Partnership Assessment in Community‐based Research (PAIR) ⁴³	Communication Collaboration Partnership values Benefits Commitment to ongoing evaluation/ continuous improvement Sustainability	Open and honest dialogue between partners; resolution of conflicts through discussion [Communication] Equal partnership; shared leadership and resources; shared goals and decision making [Collaboration] Mutual trust and respect; valuing other perspectives; appreciation of partner; understanding culture of partner organization and community [Partnership values] Plans and resources for a sustainable partnership, including commitment from partners [Sustainability]	Evaluation of critical elements of academic‐community partnership	31 Likert‐type items and one open‐ended question	Community input sought at each step of measure development (generation of dimensions and items, item sorting and feedback, cognitive interviews and measure piloting)
Patient Engagement Workbook ⁴⁹	Reasons for engagement/justification Cost of engagement Roles of partners across stages of research Logistics of engagement Identification/recruitment of patient partners, including compensation Institutional requirements for patient engagement Guidelines for screening participants Research team preparation for engagement Patient partner training for engagement Patient partner retention and feedback Data‐sharing processes Closure activities for project end	Goals; expectations and rules; training [Research team preparation for engagement] Tips for soliciting feedback and addressing partner concerns [Patient partner feedback]	Reflection guide for researchers considering engaging patients and documenting patient efforts	102 open‐ended questions	–
*Selected Measures of Context, Process, and Outcome*
Research for Improved Health (RIH) Partnership Interview Guide ⁸⁵	Individual/project background Context for all communities Intervention research questions Policy research questions Partnership/group dynamics Individual‐level issues Partnership outcomes Research design	Origins of partnership [Background] Personal motivations; relevant knowledge of community; approval processes [Context] Role of community knowledge and experience; professional articles; evidence and best practices; local programs/agencies in project [Intervention research] Process of prioritizing policy changes; action steps; role of data and evidence; advocacy and personal testimony [Policy research] Successes in the partnership? Challenges? Power and trust? [Dynamics] Personal qualities useful for involvement in partnership; researchers share background with community? [Individual‐level issues] Successes of partnership; community member benefits [Partnership outcomes] Description of research approach; CBPR's influence on project? [Research design]	To describe the challenges and successes of the participatory process and outcomes that arose from the partnership	39 open‐ended questions	Developed and refined with relevant stakeholders
Rochester Suicide Prevention Training Institutes Evaluation ⁵¹	Personal knowledge and capabilities Partnership agency Partnership benefits	CBPR knowledge and research skills [Personal knowledge and capabilities] Quality of partnership interactions; community‐focused; clear roles and policies; community capacity for research [Partnership agency] Knowledge; improved research; improved partnership [Partnership benefits]	Follow‐up survey to assess knowledge and skills for engagement, partnership processes, and benefits or outcomes	58 closed‐ended items (Likert, yes/no, checklist)	Cronbach's α Personal knowledge = 0.55‐0.87 Partnership agency = 0.66‐0.93 Partnership benefits = 0.84‐0.92
Program for the Elimination of Cancer Disparities (PECaD) Collaboration Survey ⁵²	Environmental characteristics of partnership Structural characteristics of partnership Group dynamics characteristics Intermediate partnership effectiveness Partnership effectiveness	Previous collaborations; diversity; organizational context [Environmental] Role within partnership [Structural] Communication; goals and vision; participatory decision making; shared power, influence, resources; mutual trust; collaborative evaluation and meetings [Group dynamics] Effectiveness in achieving goals; benefits of participation; satisfaction with role and influence; shared ownership; group empowerment [Intermediate] Collective impact; sustainability; enhanced networks/capacity [Effectiveness]	Assessing capacity, group dynamics, and effectiveness of achieving principles of CBPR in partnership	45‐60 closed‐ and open‐ended items (adaptation by two different community‐engaged project groups results in a varying number of items)	–
CBPR Model Visioning Guide ⁸²	CBPR model for planning and visioning ○ Priority ○ Desired outcomes ○ Context for planning ○ Partnership processes ○ Interventions/research design	Priority issues [Planning priority] Desired intermediate system and capacity outcomes; long‐term community, health, and health equity outcomes [Desired outcomes] Review of contextual factors like socioeconomic, cultural, historical collaboration and trust, capacity [Context for planning] Review of partnership dynamics like individual characteristics, dialogue, conflict management, leadership, and partnership structures [Partnership processes] Integration of cultural or community knowledge for interventions matching community values, norms, practices; empowering processes; involvement of community members in all stages and impact on research design [Interventions]	Guidance for adapting a CBPR model to fit context, planning a new research project, evaluating partnership practices, and assessing the impact of practices	19‐page workbook/ facilitation guide	–
CBPR Model Visioning Guide ⁸² (cont.)	CBPR model for evaluation and reflection ○ Context evaluation ○ Partnership processes evaluation ○ Intervention/program and research evaluation ○ Outcomes evaluation	2‐3 important contextual issues to evaluate or consider; effects on ability to work together [Context evaluation] 2‐3 important partnership issues to evaluate or consider; impact on collective work [Partnership evaluation] 2‐3 important intervention/research issues to evaluate or consider; importance of integrating cultural/local knowledge; ability to work together/construct joint understanding of research; importance of including community in all steps of research [Intervention evaluation] 2‐3 intermediate and long‐term outcomes important to evaluate or consider [Outcomes evaluation]			–
Engage for Equity (E2) Key Informant Survey ⁹⁹	Project features Populations and communities involved in project Community challenges Reflective practices Training topics Hiring and resource sharing Research integrity and governance practices Advisory boards Formal agreements Project outcomes	Initiator of study; community partners; type of partnership; description of meetings; number of members [Features] Focus of project; demographics of academic and community team members [Populations] Social, economic, or structural issues impacting the health of the community [Challenges] Extent that partnership engages in self‐evaluation or quality improvement [Reflective] Formal training/discussions about cultural sensitivity, CBPR, reflection [Training] Hiring; decisions around resources; distribution of funding [Hiring and resources] Human subjects training; confidentiality agreements; approvals on behalf of community [Research integrity] Advisory boards and their role [Advisory boards] Memorandums of understanding; verbal agreements; data ownership and sharing [Agreements] Publications; additional research/funding; evaluation instruments; revisions to Institutional Review Board (IRB) policies/practices [Project outcomes]	To describe engaged project structural features and processes	90 closed‐ and open‐ended items	Developed and refined through input with relevant stakeholders
Engage for Equity (E2) Community Engaged Research Survey ⁶⁰	Community context and capacity Partnership capacity Bridging differences Missions and strategies Community involvement in research Influence in the partnership Quality of dialogue Reflexivity Leadership Resource use	Resources; experience with partnered projects [Community context and capacity] Partnership knowledge, skills, diverse members, legitimacy, and credibility in community [Partnership capacity] Skills to bridge differences; similar backgrounds among community and academic members [Bridging differences] Shared agreement for missions/strategies; clear understanding of goals [Missions and strategies] Level of involvement of community members in different stages of research process [Community involvement in research] Amount of voice and influence over decisions; commitment to decisions [Influence] Attitudes; listening; consensus; conflict/hostility among members [Quality of dialogue] Partnership discussions on activities; power; privilege; and improvements to collaboration [Reflexivity] Effectiveness of leadership in achieving active participation, respect, creativity [Leadership] Project's use of resources [Resource use]	Assessment of context, partnership processes, and research processes of engaged project Evaluation of intermediate and long‐term outcomes of engaged research	126 Likert‐type, yes/no, and open‐ended items	Refined through discussion with relevant stakeholders and psychometric testing ⁹¹
Engage for Equity (E2) Community Engaged Research Survey ⁶⁰ (cont.)	Trust Community engagement principles Partnership synergy Agency outcomes/benefits Personal advantages Personal challenges Power relations in research Project sustainability Health outcomes Current community‐level, research, and policy outcomes Future community‐level, research, and policy outcomes Quality and satisfaction Time use	Trust in people and decisions of partnership; type of trust [Trust] Builds on resources and strengths in the community; facilitates equitable partnerships in all phases of the research [Community engagement principles] Goal setting and problem solving among partners [Partnership synergy] Enhanced reputation of community organization; use of expertise or services by others [Agency outcomes] Enhanced reputation; ability to affect policy; ability to seek education [Personal advantages] Challenges participating in partnership [Personal challenges] Change in power relations in research process and capacity [Power relations] Likelihood of project sustainability [Project sustainability] Improvement to community's health [Health outcomes] Changes to policy, practice, cultural identity/pride, social impacts, better research [Current outcomes] Desired changes to outcomes [Future outcomes] Quality and satisfaction with partnership [Quality and satisfaction] Time dedicated to project per week, both covered and not covered by salary [Time use]
Clinical and Translational Science Award (CTSA) Engagement Survey ⁷⁶	Definition of community engagement Institutional partners Institutional transformation Measures being tracked Community advisory boards (CAB)	Best description of CTSA's engagement with community [Definition] Types of community stakeholders [Institutional partners] Number and intensity of local collaborations; institutional resources [Transformation] Metrics that CTSA's track, including community members with research training, projects that seek input from community members, publications and grant proposals [Measures] Presence of CAB associated with CTSA and larger institution; serving community members [Community]	Survey of academic perspectives on community engagement activities within clinical and translational science institutions	12 yes/no or forced‐choice items	–
Partnership River of Life ⁵⁹	Start of partnership Important stages Tributaries Facilitators Obstacles Future vision Overall reflection	The group selects “where it's important to start” (eg, historical events before partnership; funding start) [Start of partnership Important or influential stages in the partnership's timeline [Important stages] Key “tributaries” (resources, mentors, members) that enter or leave the partnership [Tributaries] Factors that facilitated the partnership's work [Facilitators] Obstacles against the partnership's work [Obstacles] Where the partnership is headed [Future vision] Experience of collective process; general thoughts and feelings; facilitators and obstacles identified; important external factors [Overall reflection]	To facilitate partnership reflection on the history and influences of the members and the goals, processes, and results of partnership	Group exercise and 5 open‐ended questions for reflection	–
*Selected Process Measures*
Research for Improved Health (RIH) Focus Group Interview Guide ¹⁰⁰	Current partnership activities Cultural issues CBPR approach Partnership/group dynamics	Change in partnership goals, resources [Current partnership] Impacts of cultural differences between academic researchers and community, influence of community knowledge [Cultural issues] Benefits and challenges of a CBPR approach; impact of CBPR approach on the project and community trust [CBPR approach] Power, conflict resolution, trust, future of partnership [Partnership/group dynamics]	To understand participant experiences within an academic‐community partnership	9 open‐ended questions	–
Partnership Trust Tool ⁶⁹	Trust	Accessibility/approachability Dependability Good/clear communication Mutual benefit Openness Providing accurate information Relationship building Responsibility Shared power/decison making Supportive Truthful Value differences	Facilitate discussion about and enhance trust within the partnership	58 items: 30 Likert‐type items and 28 open‐ended written questions	–
Building Your Capacity Evaluation Survey ¹⁰¹	Community partner capacity for research after training (competencies)	Competencies such as conducting a literature review, recruiting participants into a study, designing a survey, or writing a research report	Assessment of community partner's research competencies post training	14 Likert‐type items	–
Community Engagement in Research Index ⁴⁶	Perception of community partner's engagement in research (tasks)	Community as consultants or active partners across various research tasks	Assessment of community partner's level of participation in various research tasks during engaged project	12 closed‐ended items	Developed through qualitative interviews with community‐engaged project primary investigators
Youth‐Led Participatory Action Research (YPAR) Process Template ⁷⁰	Training and practice of research skills Promoting strategic thinking Group work Opportunities for networking Communication skills Power sharing over major decisions Power sharing over class structure	Identifying research questions; developing tools; data collection [Training and practice] Considering how to influence rules and policy; alternative points of view [Promoting strategic thinking] Productive group processes; roles to further group goals [Group work] Student contact; teacher contact on behalf of students [Opportunities for networking] Practicing formal presentations; sharing ideas and perspectives aloud [Communication skills] How power is shared as decisions are made [Power over decisions] How power is shared in everyday class climate [Power over structure]	Classroom observational measure to assess the quality of YPAR implementation	25 qualitative codes	Intraclass correlation coefficients (ICCs) for interrater reliability: Training = 0.88 Promoting = 0.73 Group work = 0.97 Opportunities = 0.73 Communication = 0.76 Power over decisions = 0.66 Power over structure = 0.72
*Selected Process and Outcome Measures*
Participatory Evaluation Measure ¹⁰²	Extent of involvement in evaluation Diversity of participants Control of the evaluation process	Extent of stakeholder involvement in the technical tasks of evaluation, such as questions and issues definition, data collection and analysis, interpretation and dissemination/reporting [Extent of involvement] Number of types of stakeholders involved, such as policymakers, frontline staff, target populations, or citizens [Diversity of participants] Authority to make decisions and other resources to bring to bear such as money, values, social skills	To assess participatory evaluation practices	3 coding schemes and weights	Face validity and apparent content validity, according to the authors
Participatory Impact Pathways Analysis ¹⁰³	“Problem Tree” Network perspective Outcomes logic model Monitoring and evaluation	Linking problems that the project directly addresses with the conditions that it wishes to improve [“Problem Tree”] Envisioning what various stakeholders will do differently after the project [Network perspective] Changes to stakeholders’ specific knowledge, attitude, skills, and practice needed to achieve the project's vision [Outcomes logic model] Outcome targets (expected benefits) for the project and specific milestones toward achieving them [Monitoring and evaluation]	To allow researchers and stakeholders to jointly describe a project's “theories of action,” develop logic models, and use them for project planning and evaluation	4 stages of impact planning	–
Interorganizational Network Survey (ION) ⁷⁵	Information exchange Joint activities Tangible resources Formal agreements	Frequency of interorganizational information exchange [Information exchange] Joint activities, trainings, events, or programs [Joint activities] Sharing of tangible resources [Tangible resources] Formal memorandums or contracts between organizations [Formal agreements]	Change in community capacity over the past 12 months	4 Likert‐type items and qualitative descriptions of linkages and resources	–
WeValueToolkit and List of Indicators ⁹⁴	Justice Integrity Unity in diversity Empowerment Trust Care and respect	Policies are perceived as fair by all involved; people are treated equitably and with fairness [Justice] Decision‐making processes are ethical; processes and outcomes of decison making are transparent [Integrity] People explore their own ideas and/or reflect on their own individuality; people appreciate the differences in others [Unity in diversity] Organization's activities have a motivating effect on participants; people are encouraged to reach their potential [Empowerment] Trust partners to meet their commitments without the need for formal agreements; trust that others share a common vision [Trust] People do not talk negatively about others in their absence; people treat each other with kindness [Care and respect]	Assess intangible, values‐related processes and outcomes of organization's projects and activities	166 indicators	Evaluated via field trials ¹⁰⁴
Community‐Based Participatory Research Rating Scale ⁷¹	Level of community involvement Relational issues Community access factors Mobilizing collaboration Training, educational and information support CBPR process methods Fostering collaboration	Importance of … community involvement in defining research objectives, developing the proposal, budget discussions, etc. [Level of community involvement] … sense of trust, mutual respect, commitment to power sharing, shared commitment [Relational issues] … remuneration for participation, reimbursement for travel/parking, flexible timelines and meeting places, technical access [Community access factors] … discussion about resources, clear roles, ground rules, common definition, strategic plan [Mobilizing collaboration] … educational materials, training, communication, information sharing [Training, education, information] … having regular meetings, use of consensus building, use of conflict resolution, regular assessments of partnership [CBPR process methods] … shared decision making, shared goals, public acknowledgement of community participation, common values [Fostering collaboration]	To assess the perceived importance of CBPR factors to the current study	33 Likert‐type items	Based on relevant social psychological and community organizing theory
Community Engagement Measure ⁶⁵	Alignment with CBPR principles ○ Quality (how well) of community engagement ○ Quantity (how often) of community engagement	CBPR principles include: focus on local relevance and determinants of health; acknowledge the community; disseminate findings and knowledge gained to all partners; seek and use the input of community partners; involve a cyclical and iterative process in pursuit of objectives; foster co‐learning, capacity building, and co‐benefit for all partners; build on strengths and resources within the community; facilitate collaborative, equitable partnerships; integrate and achieve a balance of all partners; involve all partners in the dissemination process; plan for a long‐term process and commitments	Assessment of the quality and quantity of adherence to engagement principles	48 Likert‐type items	Cronbach's α Quality = 0.99 Quantity = 0.98
Peer Engagement Process Evaluation Framework ¹⁰⁵	Supportive environment Equitable participation Capacity building and empowerment Improved programming and policy	Assess and address barriers and facilitators of engagement [Supportive environment] Ways to ensure that all participants’ experiences are respected and represented [Equitable participation] Individual and group abilities in terms of access, mobilization, interest, networks, opportunity, and literacy [Capacity building] Changes to program or policy; understanding of local risk environment; information synthesis; solution design [Improved programming]	To guide evaluation of primary data and project documents	4 domains, with assessment questions and sample constructs to measure	–
Ripple Effect Tool ⁸³	Personal connections Professional connections Organizational connections New projects Changes in perceptions of health and lifestyle	Number of new personal connections since beginning of project; benefits to self, organization, community [Personal connections] Number of new professional connections since beginning of project; benefits [Professional connections] Number of new organizational connections since beginning of project; benefits [Organizational connections] New coalitions, committees, advisory boards, classes, or groups; changes in employment; articles, presentations, policy briefs, written or creative expression, news articles; new funding; policy or procedural changes as a result of the project [New projects] Change to understanding of health; lifestyle changes related to health; changes in people around you as a result of participation in project [Changes in perceptions]	To measure increased social connectedness and other benefits of community‐engaged research participation	12 open‐ended questions	–
Prevention Research Centers Cost Analysis Instrument ¹⁰⁶	Labor Materials and consumables Travel Location	Salary and wage of each individual involved in the project [Labor] Cost of products or services regularly used; durable and capital goods [Materials and consumables] Travel expenses [Travel] Cost of primary project location and external places or settings used for project [Location]	To systematically collect budget year data on the costs related to a community‐engaged project	4 open‐ended items	Piloted with relevant stakeholders
*Selected Outcome Measures*
Student Learning Outcomes of Community‐Based Research (CBR) ¹⁰⁷	CBR experiences Professional skills Civic engagement Educational experience Academic skills Personal growth	Type of CBR experience (course, internship, etc.); activities experienced in CBR course; course critique [CBR experience] Improved ability to run meetings, delegate, listen to others [Professional skills] Enhanced likelihood of participating in civic activities, voting [Civic engagement] Increased interest in college, in selected major [Educational experience] Improved analytical, academic writing, research skills [Academic skills] Ability to consider others’ perspectives; deepened understanding of self [Personal growth]	To measure student outcomes/benefits of participation in community‐based research coursework/projects	19 yes/no and Likert‐type items	Cronbach's α Overall CBR outcomes = 0.95 Professional skills = 0.91 Civic engagement = 0.86 Educational experience = 0.87 Academic skills = 0.80 Personal growth = 0.94. Convergent validity also tested
Social Network Analysis of Partnership Networks ¹⁰⁸	Partner linkages Trust Benefits/drawbacks to partnership network Level of engagement	Shared information; shared resources; collaboration on community events; referrals; collaboration on grant proposals [Linkages] Strength of partnership relationship [Trust] Attendance at quarterly meetings [Engagement]	Measure the evolution/change in interorganizational relationships	19 survey items	–
Progress of Collaborative Action ⁴⁷	Intensity of change—duration Intensity of change—reach Intensity of change—strategy Strategy employed	Assessment of (a) the activities and accomplishments facilitated by the partners and (b) the number of people reached or engaged in the activity	Measuring progress of partnership; intensity of change and strategy employed for change	Mixed methods coding scheme across 3 domains for partnership document review	96% inter‐observer agreement among 2 independent coders
Community Health Council Outcomes ¹⁰⁹	Council development Community assessment Community action (coordination and leadership) Success stories Barriers	Number of presentations between community organizations and council; boards and committees [Council development] Times that emerging issues were discussed at council meetings [Community assessment] Current community priority; shared projects with other organizations; number of new/enhanced strategies, programs, services; new funding; new policy change initiatives [Community action] Success stories about outcomes [Success stories] Problems while carrying out council mission [Barriers]	Evaluate the effect of community health council actions on local health systems and health status outcomes	20 quantitative indicators with accompanying narrative (open‐ended) probes	Developed through qualitative document review and quantitative survey of relevant stakeholders. Stakeholder participation in analysis interpretation
Knowledge Ownership Social Network Analysis ⁷⁴	Social network analysis of “knowledge ownership” (related to empowerment and self‐determination)	“Looking back to the beginning of the project, please rank the committee members [stakeholders] in order of who you would turn to for information relating to the project at that time”	Change in active involvement in knowledge creation	1 item	–
Critical Outcomes of Research Engagement ¹¹⁰	Patient‐centered Meaningful Team collaboration (“teamness”) Understandable Rigorous Integrity/adaptable Legitimate Feasible Ethical and transparent Timely Sustainable	Patient influence at each stage of research; outcomes compared to studies without patient engagement [Patient‐centered] Meaningful outcomes to patient community [Meaningful] Patient community's level of comfort with discussions and written materials; trust, respect among members [Team collaboration] Reading level and plain language of study materials and presentations; patient community training in research [Understandable] Realistic continuous improvement methods used? Discrete decisions for which partners were consulted at which level [Rigorous] Research question is clear and understood by all; partner contributions to ethical research design [Integrity/adaptable] Level of engagement at each stage of research; diversity of study population [Legitimate] Goals and methods are realistic and feasible [Feasible] Materials, study design, and data/privacy protection are transparent and fair [Ethical and transparent] Research conduct and sharing of information is timely [Timely] Mediums/channels used to disseminate/share findings; partners’ role in dissemination; use of findings outside the research study [Sustainable]	To assess the desired outcomes of engaged research	25 open‐ended questions	Developed through a workshop with patient partners