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
PrinciplesValues Summary principles CLAHRC EofE
Respect Mutual respect ContinuityActive, comprehensive & embedded
Support Access to the support necessary Allocated support costs (5%)Operational structure
Transparency Accessible information, clarity and openness
Operational structure
Responsiveness Commitment to act on involvement and make changes
Identifying challenges & opportunitiesProject PPIR components
Diversity Relevant groups with equal opportunity, seldom heard voices represented
Build on CPT CLAHRC strengths& existing regional and national links
Accountability Accountability 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 capacity 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 themeTheme PPIR
leads and support
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 2013 http://piiaf.org.uk/index.phpPublic involvement impact Assessment Framework (PiiAF)
Developing an impact assessment planCLAHRC 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