Identification and prioritisation
Consumers can help generate new ideas for research, prioritise existing ideas or clarify questions that researchers may have about potential studies
It is considered good practice to involve consumers as early as possible. Consumers working with researchers to prioritise research topics or themes can be a powerful form of involvement as it helps to ensure that researchers’ priorities align with those of patients and service users.
Studies show that there can be mismatches between what has been researched and what consumers would like researched. Besides the outcomes that researchers choose, patients and their carers are often especially concerned with the practicalities of daily life, such as alleviating sleep disturbance, fatigue or anxiety caused by their condition.
This is illustrated in the bar chart below:
Tallon D et al. Relation between agendas of the research community and the research consumer. Lancet 2000; 355: 2037–40
Sometimes, consumers may need to be advised that a particular suggestion, although valid, might not be feasible if it is outside the scope of the researcher's expertise or the funder's or regulator's requirements
What involving consumers at this stage could look like:
- making contact with existing consumer groups or patient forums to help inform your priorities
- holding a one-off focus group to bring together people living with a disease condition to identify the most important research topics
- making contact with individual patients in the clinic (through staff) to better understand their unmet needs
- adopting a published model or approach to priority setting
You can access details on where to find consumers to involve from the Recruiting Consumers webpage.
You can access information on consumers training requirements for effective involvement from the Training Consumers webpage.
- Tallon, D et al. "Relation Between Agendas of the Research Community and the Research Consumer." Lancet 10 (2000): 2037–2040
- Crowe, S et al. "Patients', Clinicians' and the Research Communities' Priorities for Treatment Research: There Is an Important Mismatch." Research Involvement and Engagement 1.1 (2015): 2
- Tong, A et al. "Research Priorities in CKD: Report of a National Workshop Conducted in Australia." American Journal of Kidney Diseases 66.2 (2015): 212–222.