Integrating comprehensive, active PPIR in CLAHRC-EofE: building impact and relevance Fiona Poland (UEA), Patricia Wilson (UH), Sarah Rae (CLAHRC PPI) CLAHRC-EofE PPI Theme CLAHRC East of England

Bridging lives and evidence Research develops in lived contexts and has lived consequences Every research stage works better when informed by real life-views (PPIR) not just research concepts PPIR can voice concerns and values beyond those of the researchers PPIR enables extended conversations and actions to be reflected in research – queries, analysis, feedback on user-friendliness CLAHRC-EofE: an extended case study/ “natural experiment” to enhance and share PPIR

PPIR as context specific – no generic standards Senior management/organisation commitment to embedding PPIR Adequate resourcing – PPIR capacity development Defined PPIR roles, responsibilities and objectives Good partnership working that leads to co- production Effective evaluation of PPIR and sharing lessons Feedback to people involved Health Research Authority 2013 consultation paper

Principles ValuesSummary principlesCLAHRC EofE RespectMutual respectContinuity Active, comprehensive & embedded SupportAccess to the support necessaryAllocated support costs (5%) Operational structure TransparencyAccessible information, clarity and openness Operational structure ResponsivenessCommitment to act on involvement and make changes Identifying challenges & opportunities Project PPIR components DiversityRelevant groups with equal opportunity, seldom heard voices represented Build on CPT CLAHRC strengths & existing regional and national links AccountabilityAccountability to communities and groups, involvement should be assessed with feedback Operational structure. Systematic appraisal of PPIR

National links INVOLVE – Tricia Wilson (UH) – Amander Wellings (PPIRes) National research in PPIR – EVOC – RAPPORT Developing collaborations – Synergistic PPIR across AHSN as well as CLAHRC EoE – National evaluation of PPIR in AHSN/CLAHRCs (Tricia Wilson) – Promoting community research capaci ty via ARVAC (Fiona Poland) LEAD across the National Institute for Health Research Build and share the EVIDENCE BASE Develop CAPACITY and CAPABILITY Influence research POLICY and PRACTICE

Operationalising PPIR: Infrastructure Multi-level systematic support, development review of relevance, quality and impact of NHS research: PPI Board members PPI–specific theme to coordinate, evaluate and support Theme PPI leads and support PPIR Core and Reference Groups Project PPIR components (with 5% costs) PPIR Implementation Action Research to examine, refine implementation objectives, share lessons

PPIR Board members PPIR – specific theme Theme PPIR leads and support Reference groups PPIR Implementation Action Research

Operationalising PPIR: Research Projects Implementing PPI in an NHS Research Programme: Evaluating the PPI contribution to CLAHRC research implementation Patients and SUs as research partners: best models for patient experience in long term conditions services? How to theorise rehabilitation therapies as part of a human rights-based multi-disciplinary approach to improving DP quality of life? What PPI role in Systems Modelling & Simulation Research? All other-theme projects to have PPIR components – each enacting PPIR in context of different topics and designs

Operationalising PPIR: The Implementation Study Aim –knowledge of “normalising” PPIR development and outcomes tracked across CLAHRC-EofE Methods – Normalisation Process Theory (NPT) to identify, evaluate,inform 2 Action Research cycles at programme and project levels. Surveys, focus groups, consensus events PPIR - integral to all stages to include SU researchers Integrated and enhanced PPIR across CLAHRC EofE Outputs - NPT-informed evaluation of PPIR processes, experiences and impacts; case studies; accessible materials; knowledge network; peer-reviewed publications

Public Involvement in Research Group (PIRG) Patient and Public Involvement in Research group (PPIRes) patIeNt and Public Involvement in REsearch (INsPIRE) Service Users Advisory Group (SUAG) Service Users Reference Group (SURG) NHS Trusts (e.g. Addenbrookes), CRN’s (e.g. DENDRON) CLAHRC East of England PPIR – sharing best practice and resources Region wide RDS PPIR Healthwatch Voluntary groups with research agendas and experience e.g. Age UK, MIND, Alzheimer’s Society, Equal Lives

Popay et al Public involvement impact Assessment Framework (PiiAF) Impacts of PPIR Values Approaches Research Practical issues

Developing an impact assessment plan Developing impact assessment plan Clearing the ground Developing intervention theory Identifying possible effects of context Formulate as assessment questions & evaluation design CLAHRC EOE basic principles Project specific & Normalisation Process Theory PPIR Implementation Action Research

CLAHRC-EofE: “Natural experiment” PPIR to emerge and deepen across projects and partnerships – over 5 years prospective study Lessons can be shared across and between PPIR participants, researchers, stakeholders Resources (training, support, networks) can be built and tested Review processes can refine processes and evaluate impact of PPIR and CLAHRC-EofE Roles, “expertise” and power can be shared – with what effects on overall programme relevance?

CLAHRC EofE: Embedded PPIR What will PPIR look like set in a richly- connected and grounded research programme context? How acceptable is PPIR for diverse stakeholders in research? How can PPIR enhance research experiences, robustness and impact? This CLAHRC will provide rich, fine-grained and well-tested evidence from a regional test-bed