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Integrating comprehensive, active PPIR in CLAHRC- EofE : building impact and relevance

CLAHRC East of England. 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. Bridging lives and evidence.

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Integrating comprehensive, active PPIR in CLAHRC- EofE : building impact and relevance

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  1. CLAHRC East of England 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

  2. 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

  3. 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

  4. Principles

  5. National links • INVOLVE • Tricia Wilson (UH) • AmanderWellings (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 capacity via ARVAC (Fiona Poland) LEAD across the National Institute for Health Research Influence research POLICY and PRACTICE Develop CAPACITY and CAPABILITY Build and share the EVIDENCE BASE

  6. 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

  7. PPIR Board members Referencegroups PPIR –specific theme Theme PPIR leads and support Theme PPIR leads and support PPIR Implementation Action Research

  8. 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

  9. 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

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

  11. Popay et al 2013 http://piiaf.org.uk/index.phpPublic involvement impact Assessment Framework (PiiAF)

  12. Developing an impact assessment plan CLAHRC EOE basic principles Project specific & Normalisation Process Theory PPIR Implementation Action Research

  13. 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?

  14. 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

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