1. Lister Hospital & University of Hertfordshire
Patients and Service Users as Partners: What Models Work Best to Improve Patient Experience in Long-Term Condition Services
(PIPPIN)
Jane Smiddy, Elspeth Mathie, Sue Marks,
Jonathan Boote, David Turner &
Maria Da Silva-Gane
Lister Hospital & University of Hertfordshire

2. PIPPIN Study Introduction Study Objectives Study Design
Scoping – Study Sites
Phase 1 – Questionnaire
Phase 2 – Qualitative – Initial themes
Next steps

3. PIPPIN Study
Patient and public involvement (PPI) remains a key element in current health policy and is linked to ensuring patient safety, improving health outcomes and patient experience
PPI remains a challenging field of research, reflecting wide ranging approaches from passive consultation to active partnership.
Limited evidence as to the impact of such approaches, both in health research and in service design and development
To determine what models of PPI improve patient experience, under what circumstances and why

4. PIPPIN Study – Research Objectives
To evaluate patient experience following
Involvement within a participatory model with patients and service users as ‘partners’
Involvement within a consultative or advisory model
Explore patient and clinician experience of working with different models of PPI
Identify enablers and barriers to participatory working aimed at improving the patient experience of long term conditions (LTC)
Identify resource use within each model of PPI to provide PPI cost estimates – Health Economist UEA

5. PIPPIN Study Costing & Audit Tool 2 year study
Scoping Exercise – Study sites in 2 different NHS Trusts
Mixed Methods Approach:
Patient Assessment of Care of Chronic Conditions (PACIC tool)
Patient Experience Survey (Trust)
Semi-structured Interviews – Patients & Staff (3 time points)
Focus Groups - Staff
Documentary Analysis
Non-participant Observation
Costing & Audit Tool

6. PIPPIN Study – Case Study Sites
(Consultative Model)
HD unit within the main hospital (150 patients/24 stations)
1 Satellite HD unit
No Dedicated stations for Shared Care – policy active 2 – 3 years
Does not have Kidney Patient Association
Peer Support - Informal
Case Study Site – 2
(Participatory Model)
HD unit within the main hospital (120 patients/21 stations)
4 Satellite HD units
2 Dedicated stations for Shared Care – policy active 2 years
Active Kidney Patient Association
Peer Support – Informal and Group

7. PIPPIN Study - Questionnaire
Participants – PACIC tool
PACIC tool – administered 127 patients across both sites (target 120)
Questionnaire (20 items) which measures specific actions or qualities of care for chronic conditions (5 point Likert scale)

8. PIPPIN Study – Outcome PACIC
Satisfied that my care was well organised Helped to set specific goals to improve
to improve my eating & exercise
Site 1 - Consultative
Site 2 - Participatory
Site 2 - Participatory

9. PIPPIN – Outcome PACIC Site1 - Consultative Site 2 - Participatory
Asked how chronic condition
affects life
Have a copy of treatment plan
Site1 - Consultative
Site 2 - Participatory

10. PIPPIN Study – Outcome PACIC Asked about my health habits
Site 1
Consultative
Site 2
Participatory

11. PIPPIN Study - Documentary Analysis
Decision Making Tools – Treatment Choices
Patient Education Pre-Dialysis – clinical, technical & some psychosocial elements
Shared care – emphasis on technical procedure of dialysis (90+ competencies for patient to move through)
Self Haemodialysis Care Questionnaire (14 point check list)

12. PIPPIN Study – Staff Interview & Focus Group
Interviews nurse managers (n=5)
Focus group with nursing staff (n=10)
Initial themes from 1/3 interview/focus time points
Involvement seen as long-standing aspect of practice
Multiple definitions of patient involvement – shared care, self care, self management, partnership management
Patient involvement often linked to shared care & home haemodialysis

13. PIPPIN Study – Staff Interview & Focus Group
Shared Care
Patient Responsibility
Increased Control
Life Long Condition
Not a new concept – a new name
Imposed – Government/Trust level policies
Opportunities to share good practice – within the Trust and other units
Resource Implications – staffing & time implications for training, longer-term time saving
Evaluating Impact – clinical measures

14. PIPPIN Study - Patient Interview (1/3)
Involvement seen as more holistic shared responsibility between patient and nurse/doctors whether participatory or consultative model of care
Patient Renal View – clinical results linked to decision-making
Shared care – control, greater knowledge of condition & own body, time reduction
Social isolation – reduced interactions
Something going wrong, wanting to separate treatment, co-morbidity
Continuum – total, parts of the process, non participation

15. Analyse second interviews – Patients & Staff
Complete third Interviews and analysis
Explore problem solving initiatives - transport
Explore psychosocial dimensions of patient involvement
Develop costing tool – partnership Health Economist UEA
Share final analysis, outcomes and conclusions

16. Thank you- To all patients and staff who participated in the study as participants and contributors

17. PIPPIN Study
The Advisory Group: Professor Ken Farrington, Dr Enric Vilar, Sandy Lines, Kirit Modi, Diane Munday, Linda Lee
University of Hertfordshire PPI Group
Funder NIHR – CLAHRC EoE
This is a summary of independent research funded by the National Institute for Health Research (NIHR’s) CLAHRC East of England Programme. The National Institute for Health Research Collaborations for Leadership in Applied Health Research & Care East of England. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.