Commissioning for long-term conditions: hearing the voice of and engaging users – a qualitative multiple case study.

Some 15 million people in England have a long-term condition (LTC) but there is concern about whether or not the NHS meets their needs. To address this, consecutive governments have developed policies aimed at improving service delivery and patient and public engagement and involvement (PPEI). There has been little research that examines the impact or benefit of PPEI in commissioning. This project explored the role and impact of PPEI in commissioning for people with LTCs. The research was undertaken during a period of substantial change in the English NHS, which enabled us to observe how the NHS reforms in England impacted on approaches to PPEI. The aim was to examine how commissioners enable voice and engagement of people with LTCs and identify what impact this has on the commissioning process and pattern of services. Our specific objectives were to (1) critically analyse the relationship between the public/patient voice and the impact on the commissioning process; (2) determine how changes in the commissioning process reshape local services; (3) explore whether or not any such changes in services impact on the patient experience; (4) identify if and how commissioners enable the voice and engagement of people with LTCs; and (5) identify how patient groups/patient representatives get their voice heard and what mechanisms and processes patients and the public use to make their voice heard. We used a case study design examining the experience of PPEI in three LTC groups - diabetes, rheumatoid arthritis and neurological conditions - through three in-depth case studies. Our approach involved reviewing practice across the UK and then focusing on three geographical areas to examine practices of commissioning health care for people with LTCs, approaches to PPEI, patterns of services for people with LTCs and the activities of local patient and voluntary organisations for people with LTCs. The research had five phases and involved participatory and interactive methods of data collection and analysis. We identified two key areas where improvements to practice in relation to PPEI can be made. The first relates to the framework or infrastructure arrangements for PPEI and how PPEI can be supported in the NHS and other organisations. To combat short-termism and the fragility of PPEI activities, sufficient resources need to be invested in developing shared understandings and sustaining relationships and infrastructures. The second area of action relates to the process for PPEI and how it should be undertaken. Action needs to be taken by organisations at both national and local levels. PPEI is a circular process and, in itself, extremely fragile. This circular process can be 'virtuous' - successful engagement leads to improved involvement and outcomes. However, where involvement is tokenistic or ends, patients and the public become disengaged and less involved and can be described as a 'vicious circle'. In addition, we identified a number of key methodological issues and areas for further research that should be considered by research funders and researchers undertaking research in the area of PPEI, including a need for research on PPEI with young people. The National Institute for Health Research Health Services and Delivery Research programme.