Post on 15-Dec-2015
www.dendron.nihr .ac.uk
Improving Patient Participation in Research
Networking Event20th March 2013
Follow the event on #Dendron
Introductions
Professor Ian McKeithDirector DeNDRoN
Professor of Old Age PsychiatryNewcastle 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
AgendaWelcome 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 SheffieldChief Executive NIHR Clinical Research Network
Heidi NeildAssistant Director of R&D
Southampton University Hospital NHS Foundation Trust
Creating a research culture
The UHS Perspective
Clinical Research at UHS
UHS Progress2006
• ~£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
Pat
ient
s an
d pu
blic
Patients and public
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• 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– 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 LeadsDivisional Research
FacilitatorsCare Group R&D Leads
The Southampton Clinical Research Partnership
UoS Faculties
UoS Research Centres
UHS Clinical Service
National – e.g. NIHR, MRC, NOCRI, UKCMRI, OSCHR, TRP, NHS, Academia
Local – Southampton Partnership
International – e.g. Non-UK Govt, Academia, Global Pharma/Biotech/Technology
SCBRNIHR BRC
NIHR Respiratory BRUNIHR ECMC
NIHR/WT CRFNIHR CTU
Cardiovascular UnitMusculoskeletal Unit
Wessex Investigational Science Hub
UHSNIHR
Topics & Specialties
Pre-clinical discovery
Experimental Medicine
Later phase research
R&D Business Unit
3. Financial restructuring• 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• Chief Executive• Director of Finance• Medical Director
Key appointments• R&D Finance Team
4. Workforce development
• CLRN and R&D Investment calls– Consultant PAs– Research support staff
• Robust business planning– Research units e.g. Critical care
• Clinical Academic Development Fund
• Flexible research nurse and AHP pool– Clinical trials assistants
• Joint appointments/secondments– Nurses and AHPs– Clinical Academics– Clinical Consultants
• Training
• Key people– 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
• Strategic objectives• Key performance indicators• Divisional Performance reviews• Streamlining e.g. R&D approval
• Key people– 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
• 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• 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– 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
Dr Chris BallINTERACT Chair, Consultant Old Age PsychiatristSouth London & Maudsley NHS Foundation Trust
Sharing ways to deliver
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:
– 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
• From the NHS Institute - NHS Change Model
• Grouped into three themes – Integration, Partnership & Culture
Partnership
Culture
Integration
Next Steps
• What do we want now?
– 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
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.
Over the past two years DeNDRoN has provided pre-application support for 39 studies for approximately £36m around half these have already received funding.
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
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.
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.
In quarter 3 (Oct-Dec) of 2012-13 DeNDRoN delivered on 100% of non-commercial studies to target and time.
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.
Delivering for Dementia & Neurodegenerative Disease
Thank you