The NIHR Medicines for Children Research Network Young People's Advisory Group met recently and developed their wish list. Many thanks to Kirsty Widdowson, consumer liaison officer for facilitating this event and sending these pictures and images. They are brilliant.
Top 10 ways to get more people involved in
research in the East Midlands.
1. Advertise research widely throughout East Midlands- TV, Radio,
Magazines, Twitter, Facebook, Posters:
To get more people involved in research we need to raise
awareness of research in general using a wide range of different methods. This
will help people to think about research at any time whether they are in a
hospital or home environment. People lead busy lives and need messages to be
clear, simple, shared with them many times through a powerful line or message
that explains the importance of research how they can get involved in research.
2. Show patients and the public how research is done:
Highlight to patients and the public how research is carried
out, use videos + films to capture how a patient may get involved in a research
study as a study participant and the role of a lay person for example, a member
of the MCRN Young Persons Advisory Group. This will help more people understand
exactly what goes on within research and the different ways they can become
involved in research throughout the East Midlands.
3. Research that meets patient’s needs:
Understand that patients want research that meets their
needs. Highlight to patients and the public the importance of being involved in
research at the earliest stages to help raise awareness of the areas they want
more research to be carried out in.
The more research that is carried out that has listened to
patients need and their experiences will help more people feel valued and
empowered to get involved in research.
4. SMILE-talk to people about research:
Smiling and talking to patients about research is the first
step to getting more people involved in research. Good body language and simple
language which is appropriate are very important when talking to the
public/patients about research and how they can be involved. The more we SMILE
at people and talk about research opportunities the more people will want to
get involved. A friendly smile and conversation with someone about research may
be the encouragement that person needs to get more involved in research.
5. Incorporate whole families:
Make sure that the whole family is included; if someone is
involved in research think about how this may impact on the whole family
whether the person is a study participant or lay reviewer. Research with
children, young people must include the whole family; parents/carers must feel
as important as the study participant themselves or if children/ young people
are involved in research as lay reviewers how does this impact on the
parents/carers, are they involved themselves, would they like to be? Engaging
with the parents/carers helps keep them informed and encourages them to be more
involved in research themselves.
6. Fill the hospitals with research:
There needs to be more information, leaflets, triggers that
we can provide to get people thinking about research when they enter a hospital
setting. This will encourage more people to think about ways they can become
involved in research. Patients and the public should walk into a hospital and
know research takes place in that setting with lots of information for them to
read. MCRN East YPAG have thought of their own ideas about how we can promote
and raise awareness of research within hospital settings and have come up with
lots of different ideas.
7. Provide that quality experience + share positive
experiences:
Think about how you can make the experience of that
particular person of more quality. What are they looking to get out of this
experience? If they are helping to support researchers at an early stage as a
lay reviewer do they want to know more about research in general, how it works
and what different research is being carried out at the moment etc. If they are
a study participant can we make them feel more at ease, comfortable and relaxed
etc. Create videos of real life positive experiences of people talking about
their experiences within research and have it showcased in as many places as
possible.
8. Trust:
Trust is an important part in encouraging any patient or
members of the public to become involved in research. It’s important to have
trust between a patient and their doctor so they can openly discuss research
involvement opportunities and it’s also important to have trust between a lay
reviewer and the researcher. Building trust within these relationships means
more people would feel valued and empowered to get involved in research, share
their own experiences and ideas with researchers etc.
9. Get rid of stereotypes- ‘Guinea Pigs’ ‘Negative experiences’:
We need to raise awareness and showcase people’s POSITIVE
experiences of research including adults, children and young people. The more
positive and real life experiences we can share with patients and the public
will slowly help to get rid of research stereotypes. The positive experiences
need to be put out to the wider world in a variety of different ways to
encourage more people to get involved in research.
10 Speak to the public:
Speak to the public to find out what they feel would
encourage more people to get involved in research. Do they want more
information on research, raise awareness of what research actually goes on
within our hospitals. The more feedback gathered means we can provide exactly
how patients and the public would like more information on research and listen
to their views on what would help to encourage more people to get more involved
in research.
These 10 points were discussed by the NIHR Medicines for
Children Research Network (MCRN) East who are based in Nottingham.
