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