A database of examples

This report describes the construction of a database of examples of consumer involvement in research. It summarises the material on the accompanying database and discusses some of the problems of finding and classifying suitable examples. The database was commissioned to: map the field of consumer involvement in research, by recording both current and recent initiatives, and the individuals and groups carrying out the work; provide material for the Standing Advisory Group on the issues raised by practical examples of consumer involvement in research; provide examples of work that might be helpful in suggesting ways of involving consumers in research. Our brief was to concentrate mainly on examples of consumer involvement in research and especially on work that would not easily be located in other databases such as MEDLINE. However, beyond that it is difficult to circumscribe exactly what has been included and what has been left out - although the discussion of criteria below presents some guidelines (see section 4.2). However, we can say what this database is NOT intended to be. Thus, it should be emphasised that, whilst a few bibliographic references and reports have been included, this database is NOT a database of academic (or even lay/popular) articles about consumer involvement in research or even about the issues raised about involving consumers in research.1 Some of these articles are very interesting and contribute to our understanding, but it was seen as important to provide primary material in order to deepen our understanding of this area. Moreover, the usual route to identifying appropriate materials - via a keyword/key phrase search of bibliographic databases - is not easy because it generates either too few or too many articles. In part this is because many of the more radical examples of primary research work with consumer involvement, that are successful within their own paradigm, would not meet the conventional >scientific= criteria of health services research and would therefore not be included in classical academic databases (see discussion below); but in part it is because the current classification criteria are inappropriate. Indeed we would hope to provide some insight into the ways in which this kind of material could be classified in order to facilitate future searchers. Equally, although our route to collecting information has, mostly, been throughorganisations and we have encouraged groups and organisations to submit entries about themselves, this is NOT a database of consumer groups active in health or self-help organisations. There are very well established databases of consumer organisations - such as HELPBOX etc. - and we would not wish to duplicate those. However we would claim that we have provided a database which is the subset of those organisations which are involved in research with an element of consumer involvement at the time of data collection, from March to November 1998. We should also stress that the material on the database has not been selected as examples of especially good or outstanding practice. We have included most of the material we were sent, excluding a very few items where we were unable to detect any form of consumer involvement other than patients being subjects in trials. Our brief was to be as inclusive as possible, to collect together a set of materials that would help others decide what is good or bad practice. Users of the database should bear this in mind and not assume that everything they see is worth replicating.