Table Box 2.

Selected verbatim quotations on experiences with different types of consumers

It depends on an individual’s traits, just as it is with researchers.

You could involve two different people, one of whom works out very well and is very reliable and conscientious and has the time and has a good way of communicating issues. Another person, however, may have difficulty responding in a timely manner, may be less skillful in communicating or may feel intimated by the subject matter and have trouble building confidence. There are many reasons why people would do a great job or may have some challenges.

I can’t say that there is a general difference that I can make between people who are, let’s say, more sophisticated consumers and who are part of a larger consumer network or a local consumer group, and those who are just sort of individuals who want to help out or who come to us because they read it on the internet or heard from their doctor or their friend about it. So I really can’t make a generalization on their involvement. They each make their own contribution for the same degree of success I think.

I think we have probably a preference for involving people who are interested as individuals rather than interested as representatives of various groups. I think everybody has something that they can contribute, so I’m not sure it makes a big difference.

The researchers find it more challenging when the consumer ends up representing an organization or perspective with an agenda of their own, which may or may not be the same as, or in harmony with an individual patient experience or the focus of the systematic review.

I do think it does make a difference who you involve. I think representatives of an advocacy organization bring a really different perspective, particularly if they have a particularly passionate mission that they are really trying to push. I think they bring a perspective that may be valuable, but it is different than an individual patient with a particular experience. I think those voices may all have their own place. But it is important to identify what the objectives are, and to match the kinds of perspective and opportunity for involvement.