Radiation Dosimetry Parameters and Isodose Curves.pptx
Leicester CLRN Meeting 'Making it real' 19 June 2013
1. Making it real: patients and public improving
healthcare research
Simon Denegri, Chair, INVOLVE; NIHR National Director for Public
Participation and Engagement in Research
Leicester, June 2013
2. Public involvement in UK health research
• Core principle of National Institute for Health
Research (NIHR)
• NIHR leadership based on evidence of public
involvement driving research quality
• NIHR funding for national advisory group has given
agenda strong platform
• Success built on ‘partnership’ working
• Clear expectation set with research community
• A ‘deal-breaker’ and ‘marriage maker’
5. The future looks like….better definition
Leadership, evidence, capacity, influence
• Focus on ‘quality’
• Strategic co-ordination
• Principles and standards
• Governance and accountability
• Collaboration and partnership in key areas
8. Policy, legislative and organisational
framework
• Life Sciences Strategy
• Health and Social Care Act 2012
• NHS Choice Framework
• NHS Constitution; use of medical records in research
• Re-organisation: CCGs, Healthwatch, Clinical Research
Networks (CRNs), Academic Health Science Networks
(AHSNs)
‘Patient experience is the most important concern for the NHS
Commissioning Board’
Sir Malcolm Grant , Chair, NHSCB
9. Challenge areas
• Patient pull-through: increasing willingness to
take part in clinical research
• Enabling patient choice in research as part of the
care pathway
• Responding to the patient challenge over how
research is conducted and their part in it
• Encouraging NHS leadership and culture to see
research as a key driver of quality
• Information-sharing, transparency and openness:
putting a human face on data to inform choice
and improve health
10. Patient participation in NHS research
Public appetite
• 82 per cent of people believe it is
important for the NHS to offer
opportunities to take part in
healthcare research.
• Less than 7% said they would
never take part in a clinical
research study.
NIHR Clinical Research Networks
Survey May 2012
• Over 70% of patients look for
information about clinical trials
ecancer 5 235 2011 ‘Information
needs of cancer patients’
Patient experience
• National Cancer Patient
Experience Survey 2012
– 1 in 3 patients had a
discussion about research
with a health professional
– > 53% who were not
asked, would like to have
been
• Discussion much less likely if
happening at all for patients with
other conditions
• 91% of Trusts do not provide
information to support patient
choice in research: NIHR CRN CC
Mystery Shopper 2013
12. ‘Every patient who walks
through our hospital doors is
offered the chance to take
part in a clinical trial’
I was able to
refer myself to a
clinical trial unit
They told myself
and other
patients what
they found out in
the trial before
anyone else.
It was easy for
me to find out
what’s going
on locally
I was able to
discuss taking
part in research
with my doctor
shortly after I
was diagnosed
I feel as though I
was able to make a
difference
Patients can talk
to other patients
in our Trust to
find out more
about research
My care and
treatment was
of a higher
quality
I joined the
national register
for research
First I took
part and now I
help design
trials. How
good is that?
13. Patient-driven access
• Vision will be achieved by patients and the
public:
– Asking about research
– Choosing to take part in research
– Knowing their contribution has made a difference
– Shaping the way in which research is designed and
delivered
– Leading change at local and national level to make
research happen
– Reporting on and sharing their experiences with
commissioners and providers
16. Patient-driven access
• Collaborative working to:
Supporting patient choice
Defining and diffusing models of public
involvement that drive participation
Improving public awareness and
understanding
Learning from patient insight and experience
Supporting patient and organisational
leadership
17.
18. UKCTG Public and Patient Feedback
• Only 28% had taken part in a clinical trial
• 38% knew little or nothing about clinical trials and would like a clear and
reliable source of information to learn more;
• 64% would like to find out about trials recruiting in their local area
• 66% found UKCTG ‘easy’ or ‘very easy’ to find their way around
• 67% found the information provided on the site ‘very clear’ or ‘fairly clear’
• 72% said that UKCTG should help them make direct contact with a clinical
trial without going through their doctor
• 88% said the site should provide relevant links to patient groups, medical
researchers and funders relevant to a clinical trial
• 88% would recommend the site to others.
19. ‘It’s ok to ask’
International Clinical Trials Day (ICTD): 20th May 2013
21. What we aspire to:
A dynamic partnership between the
public, researchers and others, to
advance NHS, public health and
social care research and improve the
health and well being of the
population
A national advisory group funded
by, and part of, the National Institute
for Health Research.
What is INVOLVE?
How we do it?
• Leadership across NIHR
• Build and share the evidence
base
• Develop capacity and capability
• Influence policy and practice
