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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
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PIPPIN Study Introduction Study Objectives Study Design
Scoping – Study Sites Phase 1 – Questionnaire Phase 2 – Qualitative – Initial themes Next steps
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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
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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
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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
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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
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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)
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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
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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
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PIPPIN Study – Outcome PACIC Asked about my health habits
Site 1 Consultative Site 2 Participatory
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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)
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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
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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
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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
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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
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Thank you- To all patients and staff who participated in the study as participants and contributors
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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.
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