And something else that I think is important for people to
know
"Try not to be nervous about all the stuff you don't know.
You're not a professional researcher but you do have knowledge that
can improve the research process."
"The NHS is hide-bound with rules and regulations, but research
is even worse so patience is a virtue and changes take place a
snails pace. We are making a difference just being there, but it
would be nice to move things along just a bit faster. Service users
can create, instigate, manage and publish work that improves
services only if the professional researchers help and are funded
to assist these projects. Perhaps this is an area of improvement
organisations such as Macmillan can help with now!"
"The CSO in Scotland provides us with excellent on going
training. My knowledge of research methodology, areas of
medical research, the main research centres in Scotland, the key
leaders in research and the priorities for the health of people in
Scotland, is increasing all the time."
"That although the research may not benefit you directly, the
act of taking part in itself is a boost, benefit, uplifting
experience."
"The demands involvement will make of them. It is
important to be realistic as to the time and effort they can put
in. They shouldn’t attempt too much and then they can have
the satisfaction of feeling a job well done."
“You get an enormously warm feeling that you have contributed to
something worthwhile.”
“That being involved in research isn't like being involved in a
support group or campaigning on health issues. You aren't fighting
for a cause or helping people cope on a personal basis - it's a
quest for knowledge.”
“If you decide to become involved you can expect to receive
appropriate training to assist you in performing your role (if not
you should ask). The person chairing a committee or working group
will normally make a point of involving you in discussions but you
should not be put under pressure to contribute. It is easy for your
initial involvement to grow and it is as well to think carefully,
in advance, about the time that you are prepared to commit.”
“Need for general public to understand the need for
controlled testing of new drugs and interventions.”
