1. Notions of involvement in North East research networks Dr Tina Cook & Dr Anna Jones, School of Health, Community and Education Studies, Northumbria University 1

2. Aims  Drivers for PPI in research networks  NE CLRNs planned response  The ‘who, how and what’ of initial work  Possible way forward 2

3. Background  UK Clinical Research Collaboration (UKCRC) strategic plan (2008-2011) for patient and public involvement in clinical research  NIHR Clinical Research Network Coordinating Centre (CRNCC) appointed a PPI manager to support CLRNs (May 2008)  Working Group on PPI in research networks in the NE of England set up in July 2008 (NTW and CDTV CLRN, Northumbria University) 3

4. Initial remit of Working Group:  To map and characterise the nature of PPI activity within and across the research networks associated with the CLRNs  To propose a programme of work that allows the CLRNs to contribute effectively to the delivery of the national PPI agenda 4

5. Who Initial mapping exercise Organisations and networks in the NE with a health remit and a brief to involve patients, carers and the public in research Formed basis of the sample although additional signposting was welcomed at any stage NE NIHR Research Networks – Topic specific, Primary care, Locality priority groups Research translation and support organisations Research funders Health service organisations Community organisations Education 5 11 research 6 practice 1 education 3 organisations declined to participate

6. How Semi-structured interviews Audit of PPI activity in NTW CLRN projects Nature and purpose of PPI activity Strategy or models of engagement Notions of effectiveness Links with other organisations Dissemination strategies Challenges IRAS form Question A14-1 for the 71 studies registered between November 2008 - July 2009 Have you/will you involve patients, service users, or members of the public in - ▫Design ▫Management ▫Undertaking research ▫Analysis ▫Dissemination ▫None of the above? 6 An in depth case study

7. What we found 7 Nature and purpose of PPI Good knowledge of the current policy on engagement in research Several examples of well-developed initiatives Wide range of understandings about: ▫what PPI involves ▫its purpose ▫how this might be translated into practice

8. 8 embedding co-working at all stages of the research and knowledge translation process. … a qualitative research interview … co-labouring at all stages of the research and knowledge translation process PPI in research conceptualised as … … recruitment into trials

9. Strategies or models of involvement What was happeningWhat was identified as needed With some exceptions, approaches to PPI appeared to be: ▫ad hoc ▫devised in isolation ▫not drawing upon local knowledge, ▫or the wealth of literature in the field ▫insufficiently embedded in organisational planning A strategy or a model (e.g. a ladder of involvement) Panels of knowledgeable service users interested in research A holistic approach encompassing training for services users, PPI staff and researchers Organisational knowledge and capacity building. 9

10. Linking, reporting, disseminating LinkingReporting and disseminating Organisations and institutions cited as links although was no clear pathway identified: North East Universities SHA and local Trusts Own R&D departments Voluntary sector Own databases of people who wish to be involved in research INVOLVE Organisations with a clear dissemination rationale generally did not have an opportunity to share that more widely. Limited knowledge of active PPI beyond individuals’ own organisations’ experiences. No central repository of regional PPI activity, effective models or case studies, impact evaluations 10

11. Identifying effectiveness Without an agreed conceptual framework, indicators of effective PPI remain underdeveloped within the region (and nationally, INVOLVE, 2009). Current indicator: ▫more people visible on panels ▫more people undertaking peer reviews Organisations awaiting guidance, particularly from the CLRN 11

12. Challenges Finding a shared conceptual framework for PPI in research and knowledge translation Finding information and accessing knowledge in relation to PPI in research and its impact Sharing the knowledge and skills that have already been developed Embedding PPI as a strategic focus for the development of practice and research Identifying resources to undertake PPI 12

13. National challenges highlighted locally Shifting the power relationship from professional/researcher to the public Identifying and engaging the hard-to-reach groups Exploring who might be considered as representative and notions of representation Dealing with the nature of funding body calls and timescales for developing research 13

14. Proposed model of working 14

15. Aims of Proposed Forum  Create a shared learning space that brings together patients and the public with NE RDS, CLRNs, LRNs and local Trusts  Develop and facilitate clear pathways for  the development of joint understanding of PPI and its impact  disseminating the evidence base  supporting recruitment  providing a repository of local knowledge on PPI and its practical application.  The details of this proposal will be developed in consultation with all stakeholders 15

16. For further details please contact: tina.cook@northumbria.ac.uk anna.jones@northumbria.ac.uk The working group members were: Dr Seamus O’Neill, Mark Ryan-Daly (NTW CLRN) Lorraine Atkinson (CDTV CLRN) Professor Charlotte Clarke, Dr Tina Cook, Dr Anna Jones, Margaret Cook (Northumbria University) 16