Patients’ experiences in the UK: Future strategic directions

Over the last decade policy has emphasised the importance of a good patient experience as a cornerstone of high quality health and social care in the UK, with many initiatives attempting to develop patient-centred practice. More recently, the Francis Inquiry has addressed the significant failings in care identified at Mid Staffordshire NHS Foundation Trust in England and has been pivotal in raising the importance of patient experience.1 The Francis report made 290 recommendations, with many emphasizing the importance of patient experience through their focus on specific ways in which the quality of experiences can be enhanced, for example, by improving support for compassionate, caring and committed care, achieved through stronger healthcare leadership. The linkages between experience, patient safety and clinical effectiveness have also been emphasized more recently.2 For the first time commissioners in England are working together to set a national level of ambition to improve experiences of care.3 Yet while policy has attempted to place patient experiences at the heart of care, significant challenges still remain before patient experience is fully integrated conceptually and organisationally. We review some of the key challenges in relation to research and consider ways forward

Developing the infrastructure for patient review in academic journals

Peer review is a well-established part of academic publishing. Its function is to assess the quality of a manuscript before publication in a journal. Research involvement and Engagement is the world’s first co-produced journal dedicated to developing the evidence base of patient and public involvement and engagement in health and social care research. Alongside traditional academic peer review we also involve other key stakeholders, including patients, carers, the public, policy makers, funders and practitioners. Following a recent survey looking at the motivations and feedback from patient reviewers in academic journals, we consider the key findings, reflect on what we already do and based on the feedback from the survey, we outline plans for future development. These plans include including improving training and guidance for reviewers, changes to systems and workflows, acknowledging and engaging reviewers, and building a sense of community

Moving from rational to normative ideologies of control over public involvement : a case of continued managerial dominance

Public Involvement (PI) is a strategic priority in global healthcare settings, yet can be seen as peripheral during decision making processes. Whilst extant research acknowledges variations in how policy is translated into practice, the majority attribute it to the limiting influence of professional hierarchies on the perceived ‘legitimacy’ of PI. Drawing on examples of three commissioning organisations within the English NHS, we outline how the variance in policy implementation for PI can be attributed to influence from the managers rather than professionals. In doing so we explore how rational ideologies of managerial control negatively impact PI. However, we also illustrate how PI alluded to in policy can be more successfully realised when organisational managers enact normative ideologies of control. Notwithstanding this assertion, we argue managerial domination exists even in the case of normative ideologies of control, to the detriment of more radical PI in service development

Building national consensus on experiences of care

The NHS in England is measured against specific indicators that focus on ‘ensuring that people have a positive experience of care,’ yet there was a lack of organisational alignment across the new national health and care organisations regarding their understanding of what constitutes a positive experience of care. This represents a major barrier to achieving an aligned and consistent system-wide approach to improving experiences. To address the need to create national alignment in definition and approach, we worked with the Patient Experience Sub-group of the National Quality Board to develop consensus on how national organisations define ‘experience of care’ and what constitutes a good experience of care, drawing on relevant evidence and guidance. Working in collaboration, we developed a ‘Narrative’ to describe this consensus and highlight resources and examples of good practice on improving experiences of care for the wider system, including commissioners and providers, to support broader improvement and implementation efforts

Reviewing progress in public involvement in NIHR research : developing and implementing a new vision for the future

Objectives To review the progress of public involvement (PPI) in NIHR (National Institute for Health Research) research, identify barriers and enablers, reflect on the influence of PPI on the wider health research system in the UK and internationally and develop a vision for public involvement in research for 2025. The developing evidence base, growing institutional commitment and public involvement activity highlight its growth as a significant international social movement. Design The ‘Breaking Boundaries Review’ was commissioned by the Department of Health. An expert advisory panel was convened. Data sources included: an online survey, international evidence sessions, workshop events, open submission of documents and supporting materials and existing systematic reviews. Thematic analysis identified key themes. NVivo was used for data management. The themes informed the report’s vision, mission and recommendations, published as ‘Going the Extra Mile—Improving the health and the wealth of the nation through public involvement in research’. The Review is now being implemented across the NIHR. Results This paper reports the Review findings, the first of its type internationally. A range of barriers and enablers to progress were identified, including attitudes, resources, infrastructure, training and support and leadership. The importance of evidence to underpin practice and continuous improvement emerged. Co-production was identified as a concept central to strengthening public involvement in the future. The Vision and Mission are supported by four suggested measures of success, reach, refinement, relevance and relationships. Conclusions The NIHR is the first funder of its size and importance globally to review its approach to public involvement. While significant progress has been made, there is a need to consolidate progress and accelerate the spread of effective practice, drawing on evidence. The outcomes of the Review are being implemented across the NIHR. The findings and recommendations have transferability for other organisations, countries and individuals

Using PROMs in healthcare. Who should be in the driving seat - policy makers, health professionals, methodologists or patients?

Editorial - No abstrac

“About sixty per cent I want to do it” : Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)—A qualitative interview study

This research was funded through a personal fellowship awarded to Louise Locock by the NIHR Oxford Biomedical Research Centre. Anne‐Marie Boylan received support from the NIHR Collaboration for Leadership in Applied Research and Care Oxford. Sophie Staniszewska is part‐funded by the NIHR Collaboration for Leadership in Applied Research and Care West Midlands. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. ACKNOWLEDGEMENTS We are grateful to the participants for sharing their experiences to inform this research. This research was supported by a panel comprising patients, members of the public, AND health, clinical and medical researchers. We are grateful for their support.Peer reviewedPublisher PD

Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective

PurposeActive patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance. MethodsA modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored. ResultsEighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance. Conclusions An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.Peer reviewe

Qualitative critical incident study of patients’ experiences leading to emergency hospital admission with advanced respiratory illness

Objectives: The high volume of emergency admissions to hospital is a challenge for health systems internationally. Patients with lung cancer and chronic obstructive pulmonary disease (COPD) are frequently admitted to hospital as emergency cases. While the frequency of emergency admission has been investigated, few studies report patient experiences, particularly in relation to the decision-making process prior to emergency admission. We sought to explore patient and carer experiences and those of their healthcare professionals in the period leading up to emergency admission to hospital. Setting: 3 UK hospitals located in different urban and rural settings. Design: Qualitative critical incident study. Participants: 24 patients with advanced lung cancer and 15 with advanced COPD admitted to hospital as emergencies, 20 of their carers and 50 of the health professionals involved in the patients' care. Results: The analysis of patient, carer and professionals' interviews revealed a detailed picture of the complex processes involved leading to emergency admission to hospital. 3 phases were apparent in this period: self-management of deteriorating symptoms, negotiated decision-making and letting go. These were dynamic processes, characterised by an often rapidly changing clinical condition, uncertainty and anxiety. Patients considered their options drawing on experience, current and earlier advice. Patients tried to avoid admission, reluctantly accepting it, albeit often with a sense of relief, as anxiety increased with worsening symptoms. Conclusions: Patients with advanced respiratory illness, and their carers, try to avoid emergency admission, and use logical and complex decision-making before reluctantly accepting it. Clinicians and policy-makers need to understand this complex process when considering how to reduce emergency hospital admissions rather than focusing on identifying and labelling admissions as 'inappropriate'