Table 1 Principles of successful consumer involvement in NHS research

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