Table Box 4.

Selected verbatim quotations on personal impressions on secondary benefits of involving consumers

It helps increase the pool of people that understand the value of these evidence reports, and I think it can help consumer groups as an additional tool in their own advocacy work. […] I think if they’re advocating for something, it’s helpful for them to know what the evidence is.

When consumers become more confident and more knowledgeable and develop critical appraisal skills, they can in turn use them when they read about new research in the media or continue to use the health care system. […] There are great benefits to increasing the health literacy in the general population about these matters.

It is a very good experience for patients to hear a discussion. In other words, instead of just doing a key informant interview with that patient, it is important, and useful, and beneficial for them to hear a discussion that also has all these sort of clinical experts in it. […] It is very eye‐opening for patients to hear what the doctors and other clinicians are saying.

On the researcher’s side or on the translator’s side it can provide a sense of accomplishment or a feeling that you’re doing the right thing, that you’re really being helpful, useful. That your research is going to make a difference.

One of the interesting things that the editors of the review group have told us over the years is that there has been a feedback process whereby the professionals grow in their knowledge and understanding of consumer perspectives and start to anticipate some of the things that they had not previously seen as important.

Of those two major goals with user involvement, I think we succeeded best in educating the future ambassadors and kind of recruiting people for the evidence‐based policy and practice cause. I think that worked really, really well.

It lends credibility to the programme, and enhances trust in the programme. It certainly helps with the translation and the dissemination.

I think there are some benefits to the organization. To be seen as involving consumers and responsive to the consumers. The aims of the organization are very different for those that involve consumer perspectives and those that don’t. […] I think it’s given us a broader, more rounded approach to issues. I think it’s made us a more inclusive organization […].

I think it has been a sort of culture and knowledge exchange. To the extent that investigators are willing and able to see consumers as experts in their own right, there is an exchange of knowledge and culture that is new and good for everybody.