Improving Patient Participation in Research
Networking Event
20th March 2013
Follow the event on
#Dendron
www.dendron.nihr .ac.uk
Introductions
Professor Ian McKeith
Director DeNDRoN
Professor of Old Age Psychiatry
Newcastle University
Background
• In 2011 the Ministerial Advisory Group for Dementia Research
recommended that we:
– Improve the consistency of support for dementia research
– Extend public engagement in research
– Embed the delivery of research across the full care pathway
• In response DeNDRoN established the INTERACT Project and put these
objectives central to delivery.
Aims for the event
• During 2012 DeNDRoN Local Research Networks have been testing different ways to
put research with care, improving patient participation and recruitment to studies.
• The aims for todays event are to:
– share the work undertaken across DeNDRoN Local Research Networks
– network and discuss the different ways of delivery
– launch the Patients in Research Infokit to act as a platform for showcasing work across the NHS
and research network to inspire openness, sharing and new ways of working
Agenda
Welcome and introduction - Professor Ian McKeith, Consultant Old Age Psychiatrist, Director DeNDRoN, University of Newcastle
09:30 – 09:35
Embedding research in the NHS - Dr Jonathan Sheffield, Chief Executive, NIHR CRN
09:35 – 10.00
Creating a research culture - Heidi Neild, Assistant Director of R&D, HSJ Research Culture Award Winner
10.00 – 10:30
Refreshment break
10:30 – 11:00
Group 1 Culture Zone / Group 2 Integration Zone / Group 3 Partnership Zone
11:00 – 12.15
Lunch - Patients in research cyber café / Poster presentations
12:15 – 13.00
Group 1 Integration Zone / Group 2 Partnership Zone / Group 3 Culture Zone
13:00 – 14:15
Refreshment break
14:15 – 14:30
Group 1 Partnership Zone / Group 2 Culture Zone / Group 3 Integration Zone
14:30 – 15:45
Sharing ways to deliver – Patients in Research Infokit - Dr Chris Ball, Consultant Old Psychiatrist, Chair INTERACT
15.45 – 16.00
Embedding research in the NHS
Dr Jonathan Sheffield
Chief Executive NIHR Clinical Research Network
Creating a research culture
Heidi Neild
Assistant Director of R&D
Southampton University Hospital NHS Foundation Trust
The UHS Perspective
Clinical Research at UHS
UHS Progress
2006
• ~£8m R&D Levy
• ~500 R&D studies
– ? patients
• Research low priority
• ?commercial research income
• Joint R&D Office
• Welcome Trust Clinical
Research Facility
• Central and South Coast
Cancer Research Network
2012
• ~£20m R&D income
• ~800 R&D studies
– ~250 recruiting (NIHR)
– >15,000 patients (NIHR)
• Research is Core Business
• 100% increase in commercial
research income
• R&D Business Unit
– Joint R&D Office
– NIHR and Non-NIHR
Research Centres and Units
– Cancer network
– CLRN
NHS engagement
Strategies
1. Trust Board leadership
2. R&D structure
3. Financial restructuring
4. Workforce development
5. Performance management
6. Information Management and Technology
7. Communications
8. Rewards and incentives
Patients and public
1. Trust Board Leadership
“To be a world class centre of clinical academic
achievement, where staff work together to ensure
patients receive the highest standards of care and the
best people want to come to learn, work and research.”
CEO January 2006
1. Trust Board Leadership
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Trust Vision
Key influencers identified
Regular meetings with key influencers
Understand agenda’s
Board presentations
Strategic objectives
Board reports
Key performance indicators
National Awards
• Constant reminders!
• Key people
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Chairman
Chief Executive
Director of Finance
Medical Director
Chief Operating Officer
Non-executive Director
2. Providing a structure for R&D
Chief Operating Officer
Division A
Surgery
Cancer Care
Critical Care
Theatres
Division B
Emergency Medicine
Specialist Medicine
Ophthalmology
Radiology
Pathology
Division C
Women and newborn
Child health
Support Services e.g.
pharmacy
Non-clinical support
Division D
Cardiovascular and Thoracic
Neurosciences
Trauma and Orthopaedics
Divisional and Care Group Management Teams
•Divisional Clinical Director
•Divisional Director of Operations
•Divisional Head of Nursing/Midwifery/Professions
•Care Group Clinical Lead
•Care Group Manager
Divisional R&D Leads
Divisional Research
Facilitators
Care Group R&D Leads
The Southampton Clinical Research Partnership
International – e.g. Non-UK Govt, Academia, Global Pharma/Biotech/Technology
National – e.g. NIHR, MRC, NOCRI, UKCMRI, OSCHR, TRP, NHS, Academia
Local – Southampton Partnership
UoS
Faculties
SCBR
NIHR BRC
NIHR Respiratory BRU
UHS
NIHR ECMC
UoS
UHS
NIHR
NIHR/WT
CRF
Research
Clinical
Topics &
NIHR CTU
Centres
Specialties Service
Cardiovascular Unit
Musculoskeletal Unit
Wessex Investigational Science
Hub
Pre-clinical
discovery
Experimental
Medicine
Later phase
research
R&D Business Unit
3. Financial restructuring
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Increased transparency
Financial re-structure
Ring-fenced R&D Business Unit
All R&D income
Ring-fenced budgets for NIHR Units and
Nursing & AHP pool
Devolved to divisions with targets
Income distribution policies
Robust business cases
Robust budget setting and monitoring
Internal recovery systems
Key people
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Chief Executive
Director of Finance
Medical Director
Key appointments
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R&D Finance Team
4. Workforce development
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CLRN and R&D Investment calls
– Consultant PAs
– Research support staff
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Robust business planning
– Research units e.g. Critical care
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Clinical Academic Development Fund
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Flexible research nurse and AHP pool
– Clinical trials assistants
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Joint appointments/secondments
– Nurses and AHPs
– Clinical Academics
– Clinical Consultants
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Training
Key people
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Chief Executive
Medical Director
Director of Nursing
Director of HR
UoS Faculty of Medicine Dean
UoS Faculty of Health Sciences Dean
Key appointments
– Divisional R&D Leads
– Senior Research Nurse Managers
– Professor of Nursing
5. Performance management
• Key people
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Strategic objectives
Key performance indicators
Divisional Performance reviews
Streamlining e.g. R&D approval
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Chief Executive
Service improvement lead
Research Governance and QA Manager
Divisional R&D Leads
• Key appointments
– Information Manager
• Key challenges
– Lack of fit for purpose information systems
– Changing goal posts
– Information overload
6. Information Management and Technology
• Local Portfolio Management
System
Key People
• Chief Executive
• Director of IM&T
Key appointments
• R&D Information Manager
7. Communications
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Branding
Web presence
Market research
Marketing materials
Press releases
Patient screens
Open days
Develop relationships
– Patient and public partners
– Funding bodies
– Commercial partners
• Patient pull
Key People
• Chief Executive
• Director of Communications
Key appointments
• R&D Communications Manager
8. Rewards and Incentives
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Commercial Research Income Distribution
Policy
New investment
– Business plans
Awards
• PharmaTimes Clinical Research Site
• HSJ NIHR Progressive Research Culture
• Hospital Heroes
– Best clinical impact
– Research individual or team of the year
– Contract commercial research highest performer
• Key people
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Chief Executive
Director of Finance
Principal Investigators
Medical Director
UoS Faculty Deans
Head of Wider Healthcare Teams
Education
– Senior Research Nurse Managers
– Divisional R&D Leads
Sharing ways to deliver
Dr Chris Ball
INTERACT Chair, Consultant Old Age Psychiatrist
South London & Maudsley NHS Foundation Trust
Sharing ways to deliver
• Introducing the opportunity to participate in research should be a core
part of any care pathway – systematically improving patients access.
• What we learn from today is that there are many ways this can be
achieved – universal themes, irrespective of the field.
– changing culture
– partnering with others
– integrating research into care pathways
Sharing ways to deliver
• We hope that the stories and information gathered today have been
useful, and have inspired you to try different approaches.
• To properly share the work undertaken in these projects we created:
www.patientsinresearch.org
• The Patients in Research Infokit a
platform for any organisation to share
ideas and best practice.
• To showcase work from across the
NHS and research community to
improve patient participation in
research and recruitment to studies.
• Putting research with care.
www.patientsinresearch.org
Patients In Research Infokit
• Launching V1 today – it features:
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Complete information on all 19 of the DeNDRoN Projects
Video and audio clips of the people who delivered
Case studies, top tips and guidance
Tools and materials to support spread and adoption
General advise, guidance tools to support delivery
Partnership
Culture
Integration
• From the NHS Institute - NHS Change Model
• Grouped into three themes – Integration, Partnership & Culture
Next Steps
• What do we want now?
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Take what you have learned today, improve on it, and act on it.
Be proactive and creative
Putting more patients in touch with research, and research with care
Make your contribution to the Patients in Research Infokit
Delivering for Dementia & Neurodegenerative Disease
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DeNDRoN non-commercial studies currently in set-up represent an estimated £35M investment in
dementias and neurodegenerative diseases research. This demonstrates how DeNDRoN is supporting
researchers, and ensuring the government’s commitment to double research funding is supported.
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Over the past two years DeNDRoN has provided pre-application support for 39 studies for approximately
£36m around half these have already received funding.
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To ensure funding and studies remain focused on the needs of patients, DeNDRoN has also established task
forces to improve studies in Parkinson’s Disease, Motor Neuron Diseases, Huntington’s Disease and for all
forms of Dementia.
Delivering for Dementia & Neurodegenerative Disease
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DeNDRoN has supported over 50,000 patients to become involved in clinical research over the past
four years – more than doubling the annual number of participants.
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DeNDRoN is involved with 247 trusts, and leads the way in performance in the commercial sector
with 80% of studies in 2011-2012 delivered on time and target.
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In quarter 3 (Oct-Dec) of 2012-13 DeNDRoN delivered on 100% of non-commercial studies to target
and time.
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DeNDRoN has supported over 400 studies in the past four years, and is currently supporting delivery
of over 125 studies across England. This number will significantly increase over the next 3 years,
reflecting the government priority on dementia.
Thank you