Table 2 Generating ethical considerations for the revised toolkit in relation to sites of power identified by both conceptual and empirical analysis

Representation

1. Particular citizens to represent selected roles and groups:

a. Are they likely to authentically represent their role or group?

b. Do they represent the axes of difference selected to be included in priority-setting?

c. Do they see themselves as representing these axes of difference?

d. Who selects them?

• Members of their group or community

• Local leaders/authorities

• Organisers of the priority-setting process

• Experts (researchers)

• Other ____________________________

2. Particular organisations to represent selected roles and groups:

a. Do organisations exist that authentically represent the selected roles and disadvantaged groups?

b. Do their memberships encompass the selected axes of difference?

c. Do power disparities exist between selected organisations?

d. Who selects individuals to represent organisations in priority-setting?

• Their members

• Their leaders

• Organisers of the priority-setting process

• Experts (researchers)

• Other ____________________________

Which organisations or individuals will represent the selected roles and groups?

Points to consider:

1. Does it make sense to ask community leaders, community members, or key informants to select individuals or organisations to represent the identified roles and groups? If yes, consider giving them some criteria that you’re hoping representatives will meet in order to avoid selection biases.

2. Do you have evidence that these organisations’ memberships reflect the group or roles’ diversity and are regularly consulted about their needs and priorities?

3. Where individuals will represent a role or group, do they collectively reflect its diversity and share lived experience with those they are representing?

4. Do any of the selected representatives have substantial financial conflicts of interest that you think will bias their identification of research priorities?

Framing

Is priority-setting framed in a non-neutral way that excludes some of their key health needs?

Will you make it clear to participants that any or most health research topics can be raised during priority-setting?

OR

Will it been made clear to participants that not all health research topics can be raised during health research priority-setting and why that is?

Having voice

1. In what ways will power suppress citizens’ agency in deliberations during priority-setting?

2. Will strategies be implemented to counteract the impact of these power dynamics on citizens’ agency in the deliberative process?

3. Will research priorities and questions be internally synthesised? By whom?

• Citizens, including less powerful citizens

• Researchers and citizens, including members of disadvantaged groups and less powerful citizens

• Researchers and citizens

• Researchers

4. If they’ll be externally synthesised, what is the justification?

5. Has local knowledge from citizens along axes of powerlessness and disadvantaged groups been used? If yes, which ones and why? If not, why not?

Facilitation

1a. Will you have a locally-based person facilitate focus groups or deliberations during priority-setting? If not, what are your reasons?

1b. How will the facilitation method/approach help equalise power dynamics between community members?

Documentation

2a. Will you have a locally-based person document the priority-setting process? If not, what are your reasons?

2b. How will community members be given an opportunity to review the documentation of the priority-setting process?

Synthesis

3. Will you give the voices of community members, especially those considered disadvantaged or marginalised, equal or greater weight than other voices when setting research priorities? If not, what are your reasons?

Leadership

1. Will the engagement process be initiated by:

a. Local researchers and citizens, or citizens alone

b. Foreign researchers, local researchers, and citizens

c. Foreign researchers and local researchers

d. Foreign researchers

2. If solely foreign researchers, what is the justification?

Who will initiate and lead engagement with community members during health research priority-setting?

Mass

1. Does the number of participants representing those who lack power over health decision-making balance or exceed the number of participants representing those who typically have such power?

1. Will the number of representatives of lower status community roles be equal to or exceed the number of representatives of higher status community roles at each stage of the priority-setting process? If not, what are your reasons?

2. Will a sufficient number of representatives of lower status roles be engaged in each stage of the priority-setting process? If not, what are your reasons?

Level of participation

1. Will decision-making be limited to (foreign) researchers, i.e. “experts”?

2. At what level will each group participate?

a. Lay control

b. Decision-making

c. Consultation

1. Will you involve community members as collaborators (decision-makers) in priority-setting? If yes, in what stages of the priority-setting process? If not, what are your reasons?

2. Is it fair to bring these community members into the same decision-making space?

Stage of participation

1. Will those who typically have power over health decision-making—(foreign) researchers, policymakers—enter the process earlier than those who do not?

2. When will each group be included?

a. Planning the process,

b. Research topic solicitation and prioritization,

c. Formulating the research question, and/or

d. Designing the intervention

1. Will you involve community partners and members from the start of the priority-setting process? If not, what are your reasons?

2. Will less influential and lower status community roles be involve later and in fewer stages of the priority-setting process than higher status and more influential roles?