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

From: Improving the use of research evidence in guideline development: 10. Integrating values and consumer involvement

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