Patients as Partners to Improve Long Term Conditions Services (PIPPIN) study

Plain English Summary

Patient and public involvement (PPI) remains a key issue in current health policy and is linked to ensuring patient safety, improving health outcomes and patient experience as well as enhancing research quality and outcomes. However, PPI remains a challenging field for meaningful research, reflecting wide ranging approaches from passive consultation to active partnership.  There continues to be limited evidence on the impact of different approaches, both in health research and in service design and development. Therefore, there is a need to evaluate what models of PPI have the most impact and in what circumstances.

The PIPPIN study was a two year research project, funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC). The project investigated the impact of different models of patient and public involvement (PPI) on patient experience. The research focussed on two specific involvement models:  –

  1. Involvement within a framework where patients participate (Participatory)
  2. Involvement within a framework where patients are consulted (Consultative)

The study objectives were to:

  1. Evaluate changes in patient experience following i. involvement within a participatory framework with patients and service users as ‘partners’ or ii. Involvement within a consultative framework.
  2. Explore patient and clinician experience of working with different models of PPI.
  3. Identify factors that aid and/or hinder participatory working.
  4. Identify resource use within each model of PPI to provide PPI cost estimates.

Research Design

The research study used mixed methods approach and, therefore, included both qualitative and quantitative research methods. Qualitative research methods focus on description and collect, analyse and interpret data through observation. Quantitative methods refer to numerical data that can be analysed using statistical tools.

The research had two distinct stages: –

Stage 1 – A review of literature to identify key characteristics of different PPI models (participatory and consultative). The findings from Stage 1 aided case study selection and helped to direct data collection in Stage 2.

Stage 2 – In-depth case studies were conducted within two Haemodialysis Units. Criteria for selection focused on units offering participatory model of PPI and consultative model of PPI to enable comparative data analysis. The evaluation employed qualitative methods (observation, analysis of documents, interviews and discussion groups) to explore patient, health professional and managers experiences of working within these two models. Quantitative measures included patient questionnaires, with Patient Experience and the Patient Assessment of Care for Chronic Conditions (PACIC) tool being used. The data from these were analysed with a computerised statistical package. The study sought to estimate aspects of cost in relation to patient and public involvement in the two case studies, to build evidence around the cost-effectiveness of PPI.

Both Haemodialysis Units were tracked over a 12 month period to identify and explore key aspects of patient and public involvement. In negotiation with health professionals on the units, it involved regular focused telephone/face-to-face interviews with a diversity of people, including local health professionals, service users and managers. The frequency of this contact was determined by the study characteristics and emerging issues.

Benefits of the Study

This research study provided an opportunity for patients and health professionals to explore their experiences and views on patient involvement in relation to care and treatment. As the study aimed to determine effective strategies of patient involvement in care and treatment, this has the potential to improve patient experience in the future and inform clinical practice.

Expected Outcomes

  1. Learning about approaches to effective and meaningful PPI that impact positively on patient experiences within renal services
  2. Dissemination via speciality and service user groups for other long term conditions to discuss implications for a broad range of chronic disease services.
  3. An evidence-based resource will be refined that can be used by Long-Term Condition services to inform approaches to PPI within service research, redesign and development
  4. Improved understanding on the link between approaches to PPI in service research, redesign and development, and the impact on patient experience
  5. Contribution to the evidence on impact and outcomes of PPI, and associated costs.

For more information about the study, please click here

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