Improving Patient Participation in Research

1. Improving Patient Participation in Research Networking Event 20th March 2013 Follow the event on #Dendron

2. Introductions Professor Ian McKeith Director DeNDRoN Professor of Old Age Psychiatry Newcastle University

3. 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.

4. 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

5. Agenda

6. Embedding research in the NHS Dr Jonathan Sheffield Chief Executive NIHR Clinical Research Network

7. Creating a research culture Heidi Neild Assistant Director of R&D Southampton University Hospital NHS Foundation Trust

8. The UHS Perspective

9. Clinical Research at UHS

10. UHS Progress 2006 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 • ~£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

11. Patients and public Patients and public Patients and public NHS engagement Strategies • Trust Board leadership • R&D structure • Financial restructuring • Workforce development • Performance management • Information Management and Technology • Communications • Rewards and incentives

12. 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

13. 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 1. Trust Board Leadership

14. 2. Providing a structure for R&D Divisional R&D Leads Divisional Research Facilitators Care Group R&D Leads • 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

15. The Southampton Clinical Research Partnership Pre-clinical discovery Experimental Medicine Later phase research 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 SCBR NIHR BRC NIHR Respiratory BRU NIHR ECMC NIHR/WT CRF NIHR CTU Cardiovascular Unit Musculoskeletal Unit Wessex Investigational Science Hub UHS NIHR Topics & Specialties UoS Research Centres UHS Clinical Service UoS Faculties

16. R&D Business Unit

17. 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 3. Financial restructuring

18. 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 4. Workforce development

19. 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 5. Performance management

20. 6. Information Management and Technology Local Portfolio Management System Key People Chief Executive Director of IM&T Key appointments R&D Information Manager

21. 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 7. Communications

22. 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 8. Rewards and Incentives

23. Sharing ways to deliver Dr Chris Ball INTERACT Chair, Consultant Old Age Psychiatrist South London & Maudsley NHS Foundation Trust

24. 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

25. 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

26. 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

27. 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

28. 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

29. Delivering for Dementia & Neurodegenerative Disease • 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.

30. 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.

31. Thank you