Improving Clinical Research across the UK – Who, Why, How? Matthew Hallsworth, Communications Programme Manager Marianne Miles, Patient and Public Involvement.

Improving Clinical Research across the UK

– Who, Why, How?

Matthew Hallsworth, Communications Programme ManagerMarianne Miles, Patient and Public Involvement Lead

Wednesday 6th September 2006

Who? - UKCRC

A partnership of organisations working together to re-engineer the environment for clinical research in the UK

– A new way of working

– A forum for leadership

– An opportunity

Why?

RESEARCH FOR PATIENT BENEFIT WORKING PARTY

FINAL REPORT

“For us, science and research constitute a front-line service, as they too, reduce distress

and pain and save lives”.

(Dr John Reid, Secretary of State for Health, 22 March 2004)

How?

NHS Infrastructure(Exp Med, Networks, IT systems)

Research Workforce

Regulatory and Governance environment

Coordinating Research Funding

NHS Incentives

• Public Awareness and Patient & Public Involvement are key themes

Awareness– Generic information resources– Educational resources on clinical research

Involvement– ‘The Exchange’– The evidence base

Who? - UKCRN

• Aim to provide a world-class health service infra-structure to support clinical research

• To make the NHS the best place in the world to do clinical research

• A managed set of Clinical Research Networks to facilitate studies (including prevention, diagnosis, treatment, care)

Targeted research funding, initially:

• Cancer• Dementias and Neurodegenerative Diseases• Diabetes • Medicines for Children• Mental Health • Stroke • Primary Care

UKCRN to cover all aspects of disease and clinical need: ‘Comprehensive UKCRN’ – April 2007

How - key UKCRN areas:

• Trials and Trials Units Support• Regulatory & Governance• Primary Care• Industry• Experimental Medicine• Patient and Public Involvement (PPI)• Information Systems• Training and Education

Why PPI?

• To positively influence/increase public awareness around clinical research

• To enhance overall quality and relevance of UK clinical research

How?

• Experience: cancer, and mental healthE.g. - identifying important and relevant research

- asking the right questions in the best way- helping researchers to design their projects- helping to develop accessible information - joining a research advisory group- helping to interpret research results- helping to promote good research

• Support for ALL involved

• Opportunity: coordination, ↑ profile, improved clinical studies leading to patient benefits

Matthew Hallsworth Marianne Miles Communications Programme Manager Patient and Public Involvement Lead

UK Clinical Research Collaboration (UKCRC) UK Clinical Research Network (UKCRN)

20 Park Crescent UKCRN Coordinating CentreLondon Arthington House, Cookridge Hospital,W1B 1AL Hospital Lane,

Leeds LS16 6QBT:  +44(0)20 7670 5389 T: +44(0)113 392 4398

Stephenson House, 158-160 North Gower Street, 4th Floor, London NW1 2NDT: +44(0)20 7670 4871

Email: [email protected] Email: [email protected]

Website: www.ukcrc.org Website: www.ukcrn.org.uk