Table 1 Examples of research co-design approaches identified

Patient and public involvement

“Doing research ‘with’ or ‘by’ the public, rather than ‘to’, ‘about’ or ‘for’ the public” ([23], p. 106)

Stakeholder engagement

“Significant collaboration with knowledge users, including the development or refinement of the research questions, selection of the methodology, data collection and tools development, selection of outcome measures, interpretation of the findings, crafting of the message and dissemination of the results” ([24], p. 1391)

Participatory research

“We use PR as an umbrella term to include all partnered research, including community-based participatory research (CBPR), action research, participatory action research, participatory evaluation, community engagement and patient engagement), and community engagement continue to attract increased attention as an approach to research, requiring formation of teams of researchers in partnerships with those affected by the issue under study in the community and those who will utilize the results to effect change” ([15], p. 1)

Patient and stakeholder engagement

Not defined [25]

Consumer engagement

Not defined [26]

Participatory methods

“Any method that can be used to obtain children’s views, aiming to involve them in the design and conduct of research” ([11], p. 682)

Inclusive health research

“Research which includes or involves people with learning disabilities as more than just subjects of research” ([27], p. 275)

Community- academic partnership

“The collaboration must have been between at least one academic partner (e.g. investigator(s) in a university department, university hospital, university medical center) and at least one community organization or stakeholder (e.g. community agency, church, school, policy-maker, according to a definition adopted in order to maximise the number of articles eligible for inclusion), and have shown some indication of shared control or shared decision making, as described in the collaboration’s collaborative or specific actions” ([28], p. 169)

Community- based participatory research

“A collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings” ([29], p. 1703)

Stakeholder involvement

Not defined [13]

Patient engagement

“Occur[ing] when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge” ([7], p. 2)

Consumer involvement in research

Consumers defined as: “Users and potential users of services, products and resources (including natural resources). In health this includes patients and potential patients; long-term users of services; carers and parents; organisations that represent consumers’ interests; members of the public who are the targets of health promotion programmes; and groups asking for research because they believe they have been exposed to potentially harmful circumstances, products or services. Depending on the context, consumers may also be described with any of the following terms: ‘lay’, ‘non-expert’, ‘service user’, ‘survivor’ or ‘member of the general public”

Involvement defined as “any form of participation in the making of decisions, at whatever stage or level, from consultation at the end of the decision-making process to joint working throughout the entire decision-making process” ([10], p. vii)