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Dementias & Neurodegenerative Diseases Research Network
“Is there a patient in the house? - public involvement in research”
Simon DenegriNIHR National Director for Public Participation and Engagement in Research
Patient participation in NHS research
Public appetite• 82 % of people believe it is important
for the NHS to offer opportunities to take part in healthcare research.
NIHR Clinical Research Networks Survey May 2012
• 81% are willing to get involved in dementia research
• 76% of people believe experiences of patients and carers could be important for shaping research studies.
YouGov for Alzheimer's Research UK 2013
Patient experience• 91% of Trusts do not provide
information to support patient choice in research
NIHR CRN CC Mystery Shopper 2013
• 34% of respondents did not know enough about what participating in research would involve - and this % is slightly higher amongst older age groups
• Very few people appear to know someone who has taken part in research
YouGov for Alzheimer's Research UK 2013
Dementias & Neurodegenerative Diseases Research Network
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• Organisations: CCGs, Healthwatch, DeNDRoN, Academic
Health Science Networks (AHSNs)
“Patient experience is the most important concern for the NHS Commissioning Board”
Sir Malcolm Grant , Chair, NHSCB
Dementias & Neurodegenerative Diseases Research Network
Reasoning for taking part – THE EVIDENCE
• Can improve quality of life / treatment• Altruistic motives • Interaction between study coordinators and
patient/carers
Dementias & Neurodegenerative Diseases Research Network
How can you can get involved?
• Taking part by participating in a clinical research study
• Becoming a member of a patient research group to share your views on our research ideas.
Dementias & Neurodegenerative Diseases Research Network
“We want more people into clinical trials; more people getting that chance to get the very latest drugs. Our ambition is this: at least 10 per cent of people with dementia should be able to take part in clinical trials – up around ten times from today”
March 26 2012: Prime Minister’s Challenge on Dementia: Delivering major improvements in dementia care and research by 2015
““
665,065 People estimated to
be living with dementia in
England
4% Of people with dementia were involved
in a dementia-related study in 2012
The challenge
Dementias & Neurodegenerative Diseases Research Network
Challenge areas
• Increasing willingness• Enabling patient choice • Involving patients from the beginning• Seeing research as a key driver of quality• Putting a human face on data to inform choice and
improve health
“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 locallyI 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?
Dementias & Neurodegenerative Diseases Research Network
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
Dementias & Neurodegenerative Diseases Research Network
Campaigns helping us deliver the research agenda…
International Clinical Trials Day (ICTD):
20th May 2013
Dementias & Neurodegenerative Diseases Research Network
Patients in Research infokit
A platform to share stories, ideas, tips and tools to embed research across the NHS.
www.patientsinresearch.org
EXPLORE
CREATE
TELL US
how others are integrating research into care
your own strategy to embed research
about your initiative no matter what your disease area
What can you do?
Get research on the agenda
2
Support “It’s OK to ask” campaign
1
Sign up to DeNDRoN community
3
Dementias & Neurodegenerative Diseases Research Network
Want to know more?
Visit: www.dendron.nihr.ac.uk
Email: [email protected]
Phone: 020 3206 4960