This presentation was delivered during a session discussing the ethics of conducting research with children and young people. The presentation emphasises the importance of involving children, young people and their families in the design and conduct of research, in order to make it more relevant.

1. Ensuring research really
does involve the young person
Jenny Preston: Patient and Public Involvement
Manager: NIHR Alder Hey Clinical Research Facility
Simon Stones: Young Patient Research Ambassador
@NIHR_PRAI @GenRYPAGs

2. Clinical Research NetworkClinical Research Network
Involving young people in health
research
• Involving patients, carers and the
public, who have personal
experience of or an interest in a
health condition(s), in research or
research related activities
• An active partnership
between patients and the
public and researchers,
doctors and other NHS staff
Patient and public involvement

3. Clinical Research NetworkClinical Research Network
The Health Research Authority (HRA) and the UK
Health Departments are committed to an environment
where:
“patients, service users and the public are given, and
take, the opportunity to participate in health and
social care research and to get involved in its
design, management, conduct and dissemination,
and are confident about doing so”
Health Research Authority

4. Clinical Research NetworkClinical Research Network
“When we talk about ‘involvement’ in research, we mean actively
getting involved in the research process, rather than being
participants of the research” HRA
True involvement in research

5. Clinical Research NetworkClinical Research Network
The research process

6. Clinical Research NetworkClinical Research Network
There’s no one size that fits all
People should be
involved in research in a
meaningful and
collaborative manner,
not for the sake of
involvement because it’s
the hot thing to do in
research these days...

7. Clinical Research Network
Children

8. Clinical Research NetworkClinical Research Network
Learn about health and clinical research in monthly
meetings
Support and work in partnership with researchers in the
delivery of health research
Provide input and collaborate with key organisations
to promote young people’s involvement in research
(RCPCH, EMA, HRA)
The role of GenerationR YPAGs

9. Clinical Research Network
Children
What do we get from the group?
group?

10. Clinical Research NetworkClinical Research Network
Involving young people in health
research
● Talk to them about research in our words - it helps them
think about it differently.
● Advise them on whether their study sounds good for
young people - tell them what’s important to us.
● Help them with the patient information sheets they
produce to explain the study for young people.
● Reassure researchers that it is a good study and not to
be afraid to ask young people and families to take part.
● Demystify research so it doesn’t seem scary.
How young people help researchers

11. Clinical Research NetworkClinical Research Network
Involving young people in health
research
● Getting the results fed back to participants of studies.
● Knowing your helping future generations.
● Hearing whether our feedback helped the research.
● Helping young people be more educated about things.
that might impact on them personally in the future.
What’s important to young people

12. Clinical Research Network
Children

13. Clinical Research NetworkClinical Research Network
The TRECA study: TRials Engagement
in Children and Adolescents
A promising alternative is to printed information sheets (PIS) is to use multimedia
information (MMI) resources. MMIs are websites with a combination of animation,
text, diagrams and video. They can be viewed on a computer, smartphone or
tablet.
The TRECA study is funded by the National Institute for Health Research (NIHR HS&DR 14/21/21).

14. Clinical Research NetworkClinical Research Network
Involving young people in health
research
● When it comes to information sheets, visual appearance
is just as important as the content.
● Think of other ways to inform young people and families
about research.
● Build an easily understandable research story.
● Don’t use jargon for the sake of it.
● Never use a long word, when a short one will do.
It doesn’t matter to me that you are using interpretative phenomenological
analysis to explore my lived experience – I’m more interested in why you want
to speak to me, and how what I will say could make a difference…
Some top tips...

15. Clinical Research NetworkClinical Research Network
● www.generationr.org.uk
● Find out more about health research through - learn
zone
● Massive Online Open Course - Improving healthcare
through clinical research. Register your interest now
● Patient Education - The A to Z of medicines
development. EUPATI Toolkit
Some helpful links