simon denegri bristol-website

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: info@dendron.org.uk

Phone: 020 3206 4960