Patricia M. Wilson

The Expert Patients Programme: a paradox of patient empowerment and medical dominance

Self-care is seen as a key element in managing resource demand in chronic disease and is also perceived as an empowering right for patients. The Chronic Disease Self-Management Programme developed in the USA has been adopted in a number of countries and in the UK has been as adapted as the Expert Patients Programme. However, despite its potential as a lay-led empowering initiative, the Expert Patients Programme has been criticised as perpetuating the medical model and failing to reach those in most need. This paper revisits a critique of the Expert Patients Programme, and drawing upon a qualitative study seeks to explore whether the Expert Patients Programme enables empowerment or replicates traditional patterns of the patient–professional relationship. A grounded-theory approach was adopted utilising focus groups, in-depth interviews and participant observation. Data were analysed through the constant comparative method and the development of codes and categories. Conducted in the relatively affluent area of the south-east of England, this paper draws on data from 66 individuals with a chronic illness who were knowledgeable, active and informed. The study revealed a number of characteristics common to expert patients that were linked to a systematic, proactive and organised approach to self-management, a clear communication style and the ability to compartmentalise emotion. The study included participant observation of an Expert Patients Programme and a professional-led self-management course. The paradoxical nature of the Expert Patients Programme was revealed, for whilst there was evidence that it reinforced the medical paradigm, there was a concurrent acknowledgement and support for the subjective experience of living with a long-term condition. Furthermore, whilst the policy emphasis has been on individual empowerment within the Expert Patients Programme, there is some evidence that it may be triggering a health consumer movement.

Success and failure in integrated models of nursing for long term conditions: Multiple case studies of whole systems

BACKGROUND Current projections indicate that the UK faces a 252% increase in people aged over 65 with one or more long term conditions (LTC) by 2050. Nurses, managing their own caseloads and clinics, working across sectors and organisational boundaries and as part of a wider multi-disciplinary team, are frequently seen as key to managing this growing demand. However, the evidence base informing the nursing role in managing LTC, the most effective configuration of the multi-disciplinary team and the policy evidence relating to the infrastructure required to support cross organisational working, remains weak. OBJECTIVES To explore, identify and characterise the origins, processes and outcomes of effective chronic disease management models and the nursing contributions to such models. DESIGN Case study whole systems analysis using qualitative interview methods. SETTINGS Two community matron services, two primary care (GP) practice nursing services, two hospital based specialist nursing services were purposefully sampled from across England and Wales. PARTICIPANTS Selection criteria were derived using a consensus conference. The nurses in the service, all patients and carers on the caseload, members of the multi-disciplinary team and stakeholders were invited to participate. METHODS Semi-structured interviews with all participants, thematic analysis within a whole system framework. RESULTS The study found high levels of clinical nursing expertise which in the case of the community matrons was meeting the aim of reducing hospital admissions. Both the primary care and hospital nurse specialist indicate similar levels of clinical expertise which was highly valued by medical colleagues and patients. Patients continued to experience fragmented care determined by diagnostic categories rather than patient need and by the specific remit of the clinic or service the patient was using. Patient data systems are still organised around the impact on services and prevalence of disease at an individual level and not around the patient experience of disease. CONCLUSION Nurses are making a major contribution to meeting the policy objectives for long term conditions. Primary care nurses and hospital nurse specialists do broadly similar roles. The scope of the nursing roles and services studied were idiosyncratic, opportunistic and reactive, rather than planned and commissioned on an analysis of local population need.

Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes.

BackgroundPublic involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg) to a study on living and dying in care homes.MethodsA longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents.ResultsThere were three areas where the involvement of the Public Involvement in Research group (PIRg) positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group.ConclusionsThe contribution of the PIRg supported a successful recruitment process that exceeded response rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic and helped in validating the interview data gathered by the researchers through the discussion groups facilitated by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed the value of developing job descriptions and a more formal means of setting out respective expectations. Future research may wish to elicit the views of focal participants in such studies about the mediation of research by public involvement in research.

Learning to work together – lessons from a reflective analysis of a research project on public involvement

Plain English summaryPatient and public involvement (PPI) in research is very important, and funders and the NHS all expect this to happen. What this means in practice, and how to make it really successful, is therefore an important research question. This article analyses the experience of a research team using PPI, and makes recommendations on strengthening PPI in research.There were different PPI roles in our study – some people were part of the research team: some were on the advisory group; and there were patient groups who gave specific feedback on how to make research work better for their needs. We used minutes, other written documents, and structured individual and group reflections to learn from our own experiences over time.The main findings were:- for researchers and those in a PPI role to work in partnership, project structures must allow flexibility and responsiveness to different people’s ideas and needs; a named link person can ensure support; PPI representatives need to feel fully included in the research; make clear what is expected for all roles; and ensure enough time and funding to allow meaningful involvement. Some roles brought more demands but also more rewards than others - highlighting that it is important that people giving up their time to help with research experience gains from doing so. Those contributing to PPI on a regular basis may want to learn new skills, rather than always doing the same things. Researchers and the public need to find ways to develop roles in PPI over time. We also found that, even for a team with expertise in PPI, there was a need both for understanding of different ways to contribute, and an evolving ‘normalisation’ of new ways of working together over time, which both enriched the process and the outputs.AbstractBackground Patient and public involvement (PPI) is now an expectation of research funders, in the UK, but there is relatively little published literature on what this means in practice – nor is there much evaluative research about implementation and outputs. Policy literature endorses the need to include PPI representation at all stages of planning, performing and research dissemination, and recommends resource allocation to these roles; but details of how to make such inputs effective in practice are less common. While literature on power and participation informs the debate, there are relatively few published case studies of how this can play out through the lived experience of PPI in research; early findings highlight key issues around access to knowledge, resources, and interpersonal respect. This article describes the findings of a case study of PPI within a study about PPI in research. Methods The aim of the study was to look at how the PPI representatives’ inputs had developed over time, key challenges and changes, and lessons learned. We used realist evaluation and normalisation process theory to frame and analyse the data, which was drawn from project documentation, minutes of meetings and workshops, field notes and observations made by PPI representatives and researchers; documented feedback after meetings and activities; and the structured feedback from two formal reflective meetings. Results Key findings included the need for named contacts who support, integrate and work with PPI contributors and researchers, to ensure partnership working is encouraged and supported to be as effective as possible. A structure for partnership working enabled this to be enacted systematically across all settings. Some individual tensions were nonetheless identified around different roles, with possible implications for clarifying expectations and deepening understandings of the different types of PPI contribution and of their importance. Even in a team with research expertise in PPI, the data showed that there were different phases and challenges to ‘normalising’ the PPI input to the project. Mutual commitment and flexibility, embedded through relationships across the team, led to inclusion and collaboration. Conclusion Work on developing relationships and teambuilding are as important for enabling partnership between PPI representatives and researchers as more practical components such as funding and information sharing. Early explicit exploration of the different roles and their contributions may assist effective participation and satisfaction.

You Cannot Choose Your Family Sociological Ambivalence in the Hemodialysis Unit

Living with end-stage renal disease is challenging and requires a great deal of self-management, but little is known about the experiences of patients and staff around the subject. We held six focus groups in three hemodialysis units, each unit hosting 1 staff and 1 patient focus group. A total of 15 staff members and 15 patients participated. We employed thematic analysis using a priori and emerging codes. Five key themes emerged: challenges, enablers, complex balancing acts, good patient/bad patient, and the hemodialysis unit as a family. We explored the family metaphor further through the work of Bourdieu, but concluded that relationships in the hemodialysis unit most closely fit the concept of sociological ambivalence. We present an explanatory framework around inherent tensions characterizing relationships within the hemodialysis unit and highlight implications for facilitating self-management and developing collaborative approaches to care.

Primary care-led commissioning and public involvement in the English National Health Service. Lessons from the past.

BACKGROUND Patient and Public involvement (PPI) in health care occupies a central place in Western democracies. In England, this theme has been continuously prominent since the introduction of market reforms in the early 1990s. The health care reforms implemented by the current Coalition Government are making primary care practitioners the main commissioners of health care services in the National Health Service, and a duty is placed on them to involve the public in commissioning decisions and strategies. Since implementation of PPI initiatives in primary care commissioning is not new, we asked how likely it is that the new reforms will make a difference. We scanned the main literature related to primary care-led commissioning and found little evidence of effective PPI thus far. We suggest that unless the scope and intended objectives of PPI are clarified and appropriate resources are devoted to it, PPI will continue to remain empty rhetoric and box ticking. AIM To examine the effect of previous PPI initiatives on health care commissioning and draw lessons for future development. METHOD We scanned the literature reporting on previous PPI initiatives in primary care-led commissioning since the introduction of the internal market in 1991. In particular, we looked for specific contexts, methods and outcomes of such initiatives. FINDINGS 1. PPI in commissioning has been constantly encouraged by policy makers in England. 2. Research shows limited evidence of effective methods and outcomes so far. 3. Constant reconfiguration of health care structures has had a negative impact on PPI. 4. The new structures look hardly better poised to bring about effective public and patient involvement.

A case study of asthma care in school age children using nurse-coordinated multidisciplinary collaborative practices

Aim To describe the role of school nursing in leading and coordinating a multidisciplinary networked system of support for children with asthma, and to analyze the strengths and challenges of undertaking and supporting multiagency interprofessional practice. Background The growth of networked and interprofessional collaborations arises from the recognition that a number of the most pressing public health problems cannot be addressed by single-discipline or -agency interventions. This paper identifies the potential of school nursing to provide the vision and multiagency leadership required to coordinate multidisciplinary collaboration. Method A mixed-method single-case study design using Yin’s approach, including focus groups, interviews, and analysis of policy documents and public health reports. Results A model that explains the integrated population approach to managing school-age asthma is described; the role of the lead school nurse coordinator was seen as critical to the development and sustainability of the model. Conclusion School nurses can provide strategic multidisciplinary leadership to address pressing public health issues. Health service managers and commissioners need to understand how to support clinicians working across multiagency boundaries and to identify how to develop leadership skills for collaborative interprofessional practice so that the capacity for nursing and other health care professionals to address public health issues does not rely on individual motivation. In England, this will be of particular importance to the commissioning of public health services by local authorities from 2015.

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

BACKGROUND Clinical commissioning groups (CCGs) are required to demonstrate meaningful patient and public engagement and involvement (PPEI). Recent health service reforms have included financial incentives for general practices to develop patient reference groups (PRGs). AIM To explore the impact of the patient participation direct enhanced service (DES) on development of PRGs, the influence of PRGs on decision making within general practice, and their interface with CCGs. DESIGN AND SETTING A mixed-methods approach within three case study sites in England. METHOD Three case study sites were tracked for 18 months as part of an evaluation of PPEI in commissioning. A sub-study focused on PRGs utilising documentary and web-based analysis; results were mapped against findings of the main study. RESULTS Evidence highlighted variations in the establishment of PRGs, with the number of active PRGs via practice websites ranging from 27% to 93%. Such groups were given a number of descriptions such as patient reference groups, patient participation groups, and patient forums. Data analysis highlighted that the mode of operation varied between virtual and tangible groups and whether they were GP- or patient-led, such analysis enabled the construction of a typology of PRGs. Evidence reviewed suggested that groups functioned within parameters of the DES with activities limited to practice level. Data analysis highlighted a lack of strategic vision in relation to such groups, particularly their role within an overall patient and PPEI framework). CONCLUSION Findings identified diversity in the operationalisation of PRGs. Their development does not appear linked to a strategic vision or overall PPEI framework. Although local pragmatic issues are important to patients, GPs must ensure that PRGs develop strategic direction if health reforms are to be addressed.

Supporting shared decision-making for older people with multiple health and social care needs: a protocol for a realist synthesis to inform integrated care models

Introduction Including the patient or user perspective is a central organising principle of integrated care. Moreover, there is increasing recognition of the importance of strengthening relationships among patients, carers and practitioners, particularly for individuals receiving substantial health and care support, such as those with long-term or multiple conditions. The overall aims of this synthesis are to provide a context-relevant understanding of how models to facilitate shared decision-making (SDM) might work for older people with multiple health and care needs, and how they might be applied to integrated care models. Methods and analysis The synthesis draws on the principles of realist inquiry, to explain how, in what contexts and for whom, interventions that aim to strengthen SDM among older patients, carers and practitioners are effective. We will use an iterative, stakeholder-driven, three-phase approach. Phase 1: development of programme theory/theories that will be tested through a first scoping of the literature and consultation with key stakeholder groups; phase 2: systematic searches of the evidence to test and develop the theories identified in phase 1; phase 3: validation of programme theory/theories with a purposive sample of participants from phase 1. The synthesis will draw on prevailing theories such as candidacy, self-efficacy, personalisation and coproduction. Ethics and dissemination Ethics approval for the stakeholder interviews was obtained from the University of Hertfordshire ECDA (Ethics Committee with Delegated Authority), reference number HSK/SF/UH/02387. The propositions arising from this review will be used to develop recommendations about how to tailor SDM interventions to older people with complex health and social care needs in an integrated care setting.

Patient experience in long-term conditions: revealing invisible perspectives.

Original article can be found at: http://journals.cambridge.org/ Copyright Cambridge University Press