What I wish someone had told me when I first got involved
is
"Getting members of the public involved in research can be new
for researchers as well as for us. Don't assume professionals
have all the answers. That's why they want you to get
involved."
"How long it takes to get anything done that makes a difference
to patients and their future outcome. Time is an essential element
– if you have six months to live then a trial finishing in 9 months
time is too long and we have to make sure that patients and
clinicians involved in trials, get the best possible outcomes for
the service user."
"I was very well briefed before I joined the Public Involvement
Group. The staff in the Chief Scientist’s Office have always
responded by return to any queries I have had."
"How amazingly brilliant it is. To be talking from a
position of expertise – instead of listening to ‘experts’ who
haven’t had my experience."
“When they say a couple of hours a month, they actually mean a
couple of days !”
“How many poor research proposals are put forward and how
difficult it is to oppose a research project (perhaps because
there's little ultimate benefit to patients, or because it seems to
treat patients unethically) when you know that the research team
need the funding or they'll all be out of jobs.”
“Nothing.”
“Lack of appreciation within some sectors of the
profession that testing of operations (interventions rather than
drugs) is required.”
