Table 4.

Taxonomy defining possible areas of impact for community stakeholder engagement in translational research

Research stages	Activity clusters	Conceptual statements about community stakeholder activities	Examples of metrics suggested by the taxonomy elements
Taxonomy domains Parent codes	Taxonomy dimensions	Taxonomy elements (Subcodes)	(CS = Community Stakeholder)
Research stages
1. Pre‐research Stage in which the overall study and hypothesized outcomes are considered and developed.	Research question	Generate ideas Identify issues of greatest importance to community stakeholders Provide input on topic and project relevance and purpose Identify community partners Contribute to choices made in specific aims Contribute to grant writing Provide lived‐experience perspective to research question framing	# ideas generated by community stakeholders CS‐rated Importance PCoR rating of research abstract or other product Recruitment and retention rate/ improvement # and diversity of CS on team
	Significance/Rationale
	Proposal development
2. Infrastructure Stage in which logistics of the project, distribution of funds, research team members and roles, and other planning decisions are made	Governance	Add extra breadth to possible funding source lists Aid in budget preparation Consult on appropriate compensation for community research contributors (patients, consumers, community organizations), including issues around time as research team members, time for participation, and cost for travel and lost work hours. Contribute to designing a shared decision‐making process Contribute to appropriate scopes of work Contribute to decisions on participant payment system (eg what does insurance cover in a clinical study)	# of CS‐identified grant opportunities # of CS participants in grant writing process through focus groups, community engagement studios, town halls, meetings Per hour rate of CS compensation compared to other stakeholders # hours of meetings attended by CS Diversity in NIH study types with CS representation – biomedical, community engagement, cancer, etc Percent of funding that is distributed to CS or community organizations Number of educational backgrounds represented on study team $ spent to support CS participation such as virtual meeting platforms, transportation costs, reimbursements Presence or absence of a separate reimbursement structure for non‐academic participants
	Team roles
	Balance of power
	Compensation model
3. Study design Stage of research in which how the study will be conducted, who will be included in the cohort to be studied.	Study population	Provide lived experience to the process of defining the population Provide relevant input on cultural appropriateness in the population of interest Identify potential stigmas for condition studied Provide input on the research setting and how that will impact the participants Consult on generalizability to other groups or communities Participate in selection of patient‐centred tools, including technology used during participation and data capture, literacy and numeracy levels of participant materials, clinical workflow, and impact of protocol logistics on participant experience Organize ideas and capture the way the research will be applied. Add to possible comparators and outcomes Familiarize researchers with the participants' need for clarity Assess community comfort level with study plans	Demographic diversity of participants in research study Demographic diversity in research participation overall and over time Presence or absence of systematic review for cultural appropriateness either through focus group analysis or review by health communication expert Frequency of research occurring in non‐academic settings such as churches, schools, etc Presence or absence of opportunity for CS to give feedback on study applicability to multiple study sites Range of formats for communication to participants such as phone, email, text, etc Measured PCoR score Number of modifications to research protocol made by CS Measured participant confidence in research protocol on a Likert scale
	Person‐centred methods
	Person‐centred protocols
4. Implementation Stage of research in which a research team details how the planned project is accomplished and carries out those operations	Operations	Identify possible research team members, especially among patients, caregivers, and other community stakeholders Assist with data collection Assist with participant recruitment Contribute to community needs assessment for effective and ethical consent.	Opportunity for CS involved in hiring process for research team members Presence or absence of non‐academics involved in data collection Diversity in CS responsibilities CS‐initiated suggestions for recruitment/retention that are implemented; recruitment goal achievement Presence or absence of changes to recruitment protocol after CS feedback on stigma PCoR score as related to study recruitment plan Number of participants recruited by CS Change in recruitment rate after CS input implemented Presence or absence of changes to data collection protocol after CS feedback
	Framing
	Community‐researcher team formation
	Data collection
5. Analysis Stage of research during which data are analysed and interpreted	Data management	Assist with data analysis (training may be needed) Provide alternative interpretation of research results (especially those that are counterintuitive) Bring attention to factors (confounders) that may not have been measured or documented in literature Interpret and assess plausibility of results Review results and provide context for relevance to patients and their communities	Presence of training opportunities for qualitative/quantitative analysis CS participating in analysis Presence of CS authors on manuscript Presence or absence of presentations to CS to discuss analysis prior to publication
	Data analysis
	Interpretation
6. Dissemination of research findings Stage of research in which final results or intermediary outcomes or works‐in‐progress communicated orally or in writing, along with edifying impact information and requests for feedback, when appropriate. This stage can be ongoing through the project implementation	Audience & Methods	Participate in co‐authorship of manuscripts Write experience non‐scientific publication Advise on appropriate audiences and non‐traditional venues for dissemination Convene town hall meetings and other opportunities for dissemination Identify appropriate community organizations who would benefit from the research Provide input on audience for appropriate message delivery Provide advice on cultural relevance and appropriate language Participate in co‐creation companion materials for dissemination (videos, newsletters, brochures, PowerPoint presentations, handouts, etc) Conduct social media outreach Organize ideas and capture the way the research will be applied	Presence of CS coauthors # of non‐scientific publications on results # CS authors in non‐scientific publications # of presentations led by CS in non‐traditional venues; # of town hall meetings # participants in presentations at non‐traditional venues and at town halls Presence of meetings with CS to discuss results Presence or absence of review by CS for intended audience; for cultural appropriateness Number of non‐traditional media outlets identified for dissemination # of companion materials produced and reach of their distribution # of social media shares by non‐scientific organizations or individuals # of non‐scientific articles which cite the original publications
	Health/Scientific literacy
	Culturally adapting messaging
7. Post‐research Stage of research concerning translation of research findings for the purposes of improving health	Translation	Assess actionability of recommended actions, if any, from research results Suggest ways to meaningfully follow up with participants Discern overall impact of the research on the community (implications for health policy) Assist in formulating next steps, convening appropriate audiences for post‐research action Helping to formulate follow‐up research question Provide support for research in their communities (implications for research relevance and policy)	Subsequent grant funding received) Number of participants successfully contacted after study completion Ratio of investment in study expenses to that into results dissemination effort Dollars invested into research follow‐up initiatives Number of policy proposals following study completion Number of meetings held with other stakeholder, such as businesspeople, new research groups, policymakers, constituents, after publication Advocacy activity for related research in the community
	Health policy
	Research policy