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In the driving seat: Health care and research led for, and by young people
IN THE driving SEAT: HEALTH
CARE AND RESEARCH LED FOR
AND BY YOUNG PEOPLE
Part of the “What does it mean to listen to children and young people” seminar series
I AM SIMON STONES
Award-winning patient leader.
Patient and carer advocate.
Expert by experience.
You can find me at:
YOUR ELEVATOR PITCH
For once, you’re not applying for
grant funding… you’re seeking the
buy in from a group of young people!
Use the post-in note to
summarise one of your current
pieces of research – you’ll have
30 seconds to win them over!
TELL ME AND I forget
TEACH ME AND I remember
INVOLVE ME AND I learn
A LITTLE BIT ABOUT ME
My journey with ill health
arthritis aged 3
Let’s revisit the
fundamentals of patient
and public involvement
and engagement in
When patients, carers and members of the public
are active partners in research, rather than the
‘subjects’ or participants of research.
It is about doing research with or by patients,
carers and the public, not doing research to
patients, carers and the public.
THINK research AT EVERY OPPORTUNITY
• Where people are actively involved in
research projects and in research
• Where information and
knowledge about research
is provided and
disseminated to people,
for example, a science fair
or hospital open day.
• When people
take part in a
referred to as
THINK involvement AT EVERY OPPORTUNITY
Providing and receiving training and development
opportunities – young people and their families are
an important part of your team
REMEMBER TO individualise OPPORTUNITIES
RESEARCH CAN empower YOUNG PEOPLE TO TAKE CONTROL
To learn about our conditions
To differentiate between
evidence-informed and anecdotal guidance
To develop skills and techniques
To find support from peers
To grow in confidence
IT’S MORE THAN JUST A nice THING TO DO
The quality and relevance of research can be
Information can be made more appropriate and
Methods can be tailored so that they are acceptable
and sensitive to participants’ needs
Participation can be increased
Identification of relevant research questions
Young people and families can be empowered
A COMMON EXERCISE THAT young people ARE FAMILIAR WITH
Your next task
TALK THE TALK, WALK THE WALK
Research is filled with so much
jargon… more than many of us
Complete the activity and see
whether you can explain each
term in plain English, for young
DRAFT STANDARDS FOR PATIENT AND PUBLIC INVOLVEMENT
1. Inclusive opportunities - We provide clear, meaningful and
accessible opportunities for involvement, for a wide range of
people across all research.
2. Working together – We create and sustain respectful
relationships, policies, practices and environments for effective
working in research.
3. Support and learning - We ensure public involvement is
undertaken with confidence and competence by everyone.
4. Communications - We provide clear and regular
communications as part of all involvement plans and activities
5. Impact - We report and act on the impact of involving the public
6. Governance - We ensure the community of interest voices are
heard, valued, and included in decision making.
CLOSER COLLABOARATION BETWEEN ALL stakeholders IS NECESSARY
Ensuring relevance Accountability
Understanding of the real issues
APPROACHES SHOULD BE bespoke
There are lots of existing young
person advisory groups which
you can contact to support
Social media is an invaluable
tool for connecting with young
people and their families.
Establishing new advisory
groups for specific projects or
initiatives is a good idea if you
want to establish a group you
can contact more frequently.
Ad-hoc focus groups work well
for prioritising and designing
research for grant applications,
especially when budgets are
Meet with patient opinion
leaders and charitable
organisations to help them
advise and shape your work.
The gold standard is when
young people and their families
become co-researchers: true
research partners with you.
There are more than 1
million children in the
UK who have a long-
term, or even lifelong
illness, and need
medicines for the
Five groups of young people across the UK
working with researchers on a variety of different
“We contribute to future research…”
“We make new friends and build confidence”
“We extend our knowledge and skills”
“We have a voice and make a difference…”
A new group, based in Liverpool, of parents and
carers with different experiences, to support
researchers on different projects.
Birmingham Bristol Liverpool
Facilitated by the Public Programmes team at the
Clinical Research Facility (based in Manchester
University Hospitals NHS Foundation Trust), this new
young people’s advisory group will enable young
people to shape research across Greater Manchester.
iCAN advocates for children in healthcare globally,
especially those involved in healthcare research
iCAN aims to to provide a platform for children
and their families to have a voice in research
An expanding network of 19 chapters across the
globe, which continues to grow!
Generation R (England)
KIDS Central Ohio
KIDS Kansas City
Organisations have questions. Patients have answers!
The MATCH.COM® of patient insights
Thousands of patient leaders -
advocates, influencers and experts -
helping others and transforming
HOW SOME ORGANISATIONS embed YOUNG PEOPLE IN THE GRANT PROCESS
Application deadline Funding announcement
Research and patient insight at every step in the process…
THE TRECA project
The NIHR-funded TRECA study has
developed multimedia information
(MMI) resources with text,
animations, videos and diagrams to
inform children, young people and
parents about research.
Place your screenshot here
THE SIRJIA project
Young people and families were
involved in identifying the primary
outcome measure for the study, as well
as the inclusion/exclusion criteria, and
methods of data collection.
YOUNG PEOPLE WITH JIA!
THE iSMART project
My involvement in research as a young
person has inspired me to undertake
some research for my doctorate, giving
young people with arthritis the power to
shape the support they want and need…
Place your screenshot here
KEY INGREDIENTS FOR including YOUNG PEOPLE IN HEALTH RESEARCH
Make young people feel valued
Enable young people to connect with you
Communicate with, not at young people
Keep the momentum going
Think about the practical side of things
Make sure you listen and act
Share feedback in a constructive and regular manner
Always be flexible
Have a little common sense too!
Give young people a
greater voice. They
are much wiser than
we give them credit
Feel free to get in touch!