Table 1 The principles and indicators of successful consumer involvement in NHS research (from Telford et al.) [37]
Principle | Indicator(s) |
|---|---|
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 |