A study into consumer involvement in research and development agenda setting for the UK National Health Service  found:
- People are involved as individuals or as members of organised service user groups or charities working on their behalf. They are either consulted about research needs, or invited to work collaboratively with researchers or research funders. Occasionally it is the service users who take the initiative and either they lead the research themselves, or researchers or research funders respond with research.
- Involvement occurs in many settings, such as interviews, focus groups, town meetings, committee meetings, or participative research teams. People who are merely consulted play no formal part in decision-making. Where they share in the decision-making, as part of a collaborative working relationship, the decision-making may be formal or informal.
- Most is learnt when service users are involved collaboratively, and they play a part in planning, evaluating and reporting their involvement.
A scoping review  of priority setting for new research found:
- Most studies addressed clinicians’ priorities, often studies of nurses’ priorities.
- Fewer studies were comparative: six compared patients’ priorities with priorities set by researchers or funding agencies; three compared clinicians’ priorities with priorities set by researchers or funding agencies; 42 compared patients’ priorities with clinicians’ priorities.
- Some studies addressed the priorities of people other than patients, for instance, policy makers or administrators.
- From the information available in the abstracts, none of the studies appears to address the priorities of both patients or the public and clinicians, and also take into account researchers’ priorities.
1. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach (2004)
2. A bibliography of research reports about patients', clinicians' and researchers' priorities for new research (2006)