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Table 1 Principles of successful consumer involvement in NHS research

From: Combining PPI with qualitative research to engage ‘harder-to-reach’ populations: service user groups as co-applicants on a platform study for a trial

1. The research will lead to benefits for consumers, in terms identified by the consumers themselves;
2. Consumers are involved in every stage of the research, from identifying the research area through to sharing the research findings;
3. Consumers’ expectations of being involved in the research are made clear to the researcher;
4. The roles of consumers are agreed between the researchers and consumers involved in the research;
5. Consumers have the opportunity to engage in research in the manner and at the level they wish, opting out of being involved in research at any time;
6. Researchers budget appropriately for the costs of consumer involvement in research;
7. Consumers are from sections of society and walks of life that are appropriate to the research;
8. Researchers respect the differing skills, knowledge and experience of consumers;
9. Consumers are offered training and personal support, to enable them to be involved in research;
10. Researchers ensure that they have the necessary skills to involve consumers in the research process;
11. Consumers are involved in decisions about how participants are both recruited and kept informed about the progress of the research;
12. Consumer involvement is described in research reports;
13. Research findings are available to consumers, in formats and in language they can easily understand