Table 2 The principles and indicators of successful consumer involvement in NHS research. Adapted from Boote et al. [25]

1. The roles of consumers are agreed between the researchers and consumers involved in the research

The roles of consumers in the research were documented

2. Researchers budget appropriately for the costs of consumer involvement in research

Researchers applied for funding to involve consumers in the research

Consumers were reimbursed for their travel costs

Consumers were reimbursed for their indirect costs (e.g. carer costs)

3. Researchers respect the differing skills, knowledge and experience of consumers

The contribution of consumers’ skills, knowledge and experience were included in research reports and papers

4. Consumers are offered training and personal support, to enable them to be involved in research

Consumers’ training needs related to their involvement in the research were agreed between consumers and researchers

Consumers had access to training to facilitate their involvement in the research

Mentors were available to provide personal and technical support to consumers

5. Researchers ensure that they have the necessary skills to involve consumers in the research process

Researchers ensured that their own training needs were met in relation to involving consumers in the research

6. Consumers are involved in decisions about how participants are both recruited and kept informed about the progress of the research

Consumers gave advice to researchers on how to recruit participants to the research

Consumers gave advice to researchers on how to keep participants informed about the progress of the research

7. Consumer involvement is described in research reports

The involvement of consumers in the research reports and publications was acknowledged

Details were given in the research reports and publications of how consumers were involved in the research process

8. Research findings are available to consumers, in formats and in language they can easily understand

Research findings were disseminated to consumers involved in the research in appropriate formats (e.g. large print, translations, audio, Braille)

The distribution of the research findings to relevant consumer groups was in appropriate formats and easily understandable language

Consumers involved in the research gave their advice on the choice of methods used to distribute the research findings