How I first got involved
"I know that patients are sometimes asked to take part in
research. But I was surprised to find out that I could work
with a team of researchers on their project. I had already
been involved in trial for a treatment for depression and then one
day my doctor asked me about joining a group of service users
working with a hospital research team to help write a questionnaire
and a patient information leaflet."
"Due having had cancer twice myself, it was an opportunity to
use some of that experience and the previous 30 years working in
the pharmaceutical industry in sales to good use. I then became
involved in my local hospital chemotherapy unit and the Airedale
Cancer User partnership group. Having sat on a committee on future
oncology service for my own hospital and another local hospital, I
joined the Yorkshire Cancer Network user partnership group. I chair
the research group at service user level and sit on various sub
group of the Yorkshire Cancer Network. I have special interest in
the bowel screening programme at National, Regional and Local
levels serving on numerous committees."
"Direct approach from the lay chairman of the Public Involvement
Group of the Chief Scientist’s Office (CSO) in Scotland while I was
a member of the Multi Centre Research Ethics Committee for Scotland
(MREC B)"
"I got involved with a local stroke survivors action
group. Our chairman has become well known in the Health
Professionals’ community and, word of mouth etc., the Stroke
Research Group got in touch and we became involved."
"As a result of an advert in a local paper for people with an
interest in health matters and personal experience of health needs
and service provision."
“Direct contact from the British Heart Foundation asking me if I
was interested in helping the Medical Research Council to allocate
£12m for research into heart disease, diabetes and cancer. I joined
the BHF Hearty Voices programme which allows them to contact me
from time to time with voluntary opportunities.”
“I'd just finished treatment for breast cancer when I saw an
advertisement in The Guardian for lay members of the Royal College
of Radiologists Patients' Liaison Group. It wasn't about research,
but got me into the patient involvement arena. Then I came across -
can't remember where - a call for people to join the National
Cancer Research Institute's Consumer Liaison Group. It didn't take
long to realise that research was, for me, the most interesting
area of patient representation.”
“Via my local Health Council. Prior to the latest reorganisation
of Health Councils in Scotland they had a direct public involvement
role. One of the commitments for which I volunteered as a health
council member was to be patient representative on the executive of
Tayside Primary Care Research and Development Network. I was later
invited to join the Chief Scientist Committee in Scotland. The
Chief Scientist Office of the Scottish Executive Health Department
has an active Public Involvement Group.”
“I was diagnosed as having breast cancer whilst doing a PhD
looking into the use of clinical trial and evidence based care in
my speciality. I knew about clinical trials in the area of breast
cancer & asked to join one if eligible.”
