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

Abstract

BackgroundSome 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.AimThe 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.MethodsWe 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.FindingsWe 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.ConclusionAction 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.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

“…There is a growing body of evidence that involvement in care leads to improved health outcomes 53,54 and patient experience, 55,56 but less evidence on any impact of PPI on the planning and commissioning of health services. 57 Within the health research arena, the policy approach to PPI has been underpinned by various claims regarding the impact of PPI. It has been suggested that PPI in setting research priorities has had an impact on the amount of research conducted on rare conditions, 28,29 and has shaped the research agenda for more common conditions, such as breast cancer.…”

“…His involvement in this study was limited to a one-off event and the data suggested hewasunlikelytoactivelyseektobeinvolvedinanyfuturestudies. The study of Peckham et al 57 also identified the impact of failing to maintain a two-way interactive process, which leads to disengagement. Some of our PPI respondents reported feeling disengaged from projects because of long periods of silence, and, if results of studies were not fed back, disenchanted with research overall.…”

“…A recent study exploring PPI in commissioning services for long-term conditions 57 suggested a model of involvement as the product of engagement plus experience. Peckham et al 57 defined engagement as a commitment to respond or interact.…”

“…Peckham et al 57 defined engagement as a commitment to respond or interact. In terms of PPI in research this could mean the public attending dissemination sessions, reading research summaries or going to engagement events.…”

Developing patient reference groups within general practice: a mixed-methods study

“…As part of a larger National Institute for Health Research (NIHR) funded study evaluating patient and public involvement in commissioning, 16 this sub-study explored the impact of the DES on the establishment of PRGs, their influence on decision making within general practices, and the relationship PRGs had with emerging CCG structures.…”