Involvement of consumers in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme

Background—Consumer involvement in
clinical guidelines has long been advocated
although there are few empirical
accounts of attempts to do so. It is
therefore not surprising that there is a
lack of clarity about how and when to
involve consumers and what to expect
from them within the process of guideline
development.
Methods—The North of England evidence
based guideline development programme
has used four diVerent methods of consumer
involvement.
Results—When individual patients were
included in a guideline development group
they contributed infrequently and had
problems with the use of technical language.
Although they contributed most in
discussions of patient education, their
contributions were not subsequently acted
on. In a “one oV” meeting with a group of
patients there were again reported problems
with medical terminology and the
group were most interested in sections on
patient education and self management.
However, their understanding of the use of
scientific evidence in order to contribute to
a more cost eVective health care remained
unclear. In a workshop it was possible to
explain the technical elements of guideline
development to patients who could then
engage with such a process and make
relevant suggestions as a consequence.
However, this was relatively resource intensive.
A patient advocate within a guideline
development group felt confidence to
speak, was used to having discussions with
health professionals, and was familiar with
the medical terminology.
Conclusions—Consumers should be involved
in all stages of guideline development.
While this is possible, it is not
straightforward. There is no one right way
to accomplish this and there is a clear
need for further work on how best to
achieve it.