Nina Fudge

Self-Reported Long-Term Needs After Stroke

Background and Purpose— Development of interventions to manage patients with stroke after discharge from the hospital requires estimates of need. This study estimates the prevalence of self-reported need in community-dwelling stroke survivors across the United Kingdom. Methods— We conducted a survey of stroke survivors 1 to 5 years poststroke recruited through Medical Research Council General Practice Research Framework general practices and 2 population-based stroke registers. Levels and type of need were calculated with comparisons among sociodemographic groups, disability level, and cognitive status using the &khgr;2 test or Fisher exact test, as appropriate. Results— From 1251 participants, response rates were 60% (national sample) and 78% (population registers sample) with few differences in levels of reported need between the 2 samples. Over half (51%) reported no unmet needs; among the remainder, the median number of unmet needs was 3 (range, 1 to 13). Proportions reporting unmet clinical needs ranged from 15% to 59%; 54% reported an unmet need for stroke information; 52% reported reduction in or loss of work activities, significantly more from black ethnic groups (P=0.006); 18% reported a loss in income and 31% an increase in expenses with differences by age, ethnic group, and deprivation score. In multivariable analysis, ethnicity (P=0.032) and disability (P=0.014) were associated with total number of unmet needs. Conclusions— Multiple long-term clinical and social needs remain unmet long after incident stroke. Higher levels of unmet need were reported by people with disabilities, from ethnic minority groups, and from those living in the most deprived areas. Development and testing of novel methods to meet unmet needs are required.

Assessing the promise of user involvement in health service development: ethnographic study

Objectives To understand how the policy of user involvement is interpreted in health service organisations and to identify factors that influence how user involvement is put into practice. Design Ethnographic study using participant observation, interviews, and collection of documentary evidence. Setting A multiagency modernisation programme to improve stroke services in two London boroughs. Participants Service users, National Health Service managers, and clinicians. Results User involvement in the programme was initiated and led by professionals. Professionals determined the areas of service improvement service users could participate in. A wide range of activities were considered “user involvement,” from patient satisfaction surveys to service users delivering peer support. Involvement tended to be most active in the least technical areas and areas with least input from clinicians. Factors that might explain this included organisational structure, the vagueness of the concept of user involvement, the value attributed to service users’ experiential knowledge, and variations in professional and service user understandings of and commitment to involvement. The gains of involvement were harder to identify in terms of impact on services. More evident were the personal gains for those involved: satisfaction of feeling listened to by professionals, social opportunities of meeting others in a similar situation, and increased knowledge about stroke and services available. Conclusions User involvement may not automatically lead to improved service quality. Healthcare professionals and service users understand and practise user involvement in different ways according to individual ideologies, circumstances, and needs. Given the resource implications of undertaking user involvement in service development there is a need for critical debate on the purpose of such involvement as well as better evidence of the benefits claimed for it.

What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke

Background  Health researchers are encouraged to involve service users as partners in their research. There is a need to increase the evidence base of involvement, including an accumulation of empirical accounts of involvement practices, demonstrating how involvement influences research and refinement of the concept itself.

Streamlined research governance: are we there yet?

Despite the promise of a new streamlined process for gaining research ethics and governance approval, Nina Fudge, Judith Redfern, Charles Wolfe, and Christopher McKevitt argue that the process is still dogged by delay and arbitrary decisions

Optimising Translational Research Opportunities: A Systematic Review and Narrative Synthesis of Basic and Clinician Scientists' Perspectives of Factors Which Enable or Hinder Translational Research

Introduction Translational research is central to international health policy, research and funding initiatives. Despite increasing use of the term, the translation of basic science discoveries into clinical practice is not straightforward. This systematic search and narrative synthesis aimed to examine factors enabling or hindering translational research from the perspective of basic and clinician scientists, a key stakeholder group in translational research, and to draw policy-relevant implications for organisations seeking to optimise translational research opportunities. Methods and Results We searched SCOPUS and Web of Science from inception until April 2015 for papers reporting scientists’ views of the factors they perceive as enabling or hindering the conduct of translational research. We screened 8,295 papers from electronic database searches and 20 papers from hand searches and citation tracking, identifying 26 studies of qualitative, quantitative or mixed method designs. We used a narrative synthesis approach and identified the following themes: 1) differing concepts of translational research 2) research processes as a barrier to translational research; 3) perceived cultural divide between research and clinical care; 4) interdisciplinary collaboration as enabling translation research, but dependent on the quality of prior and current social relationships; 5) translational research as entrepreneurial science. Across all five themes, factors enabling or hindering translational research were largely shaped by wider social, organisational, and structural factors. Conclusion To optimise translational research, policy could consider refining translational research models to better reflect scientists’ experiences, fostering greater collaboration and buy in from all types of scientists. Organisations could foster cultural change, ensuring that organisational practices and systems keep pace with the change in knowledge production brought about by the translational research agenda.

Gender equity programmes in academic medicine: a realist evaluation approach to Athena SWAN processes

Objectives Gender inequity has persisted in academic medicine. Yet equity is vital for countries to achieve their full potential in terms of translational research and patient benefit. This study sought to understand how the gender equity programme, Athena SWAN, can be enabled and constrained by interactions between the programme and the context it is implemented into, and whether these interactions might produce unintended consequences. Design Multimethod qualitative case studies using a realist evaluation approach. Setting 5 departments from a university medical school hosting a Translational Research Organisation. Participants 25 hours of observations of gender equality committee meetings, 16 in-depth interviews with Heads of Departments, Committee Leads and key personnel involved in the initiative. 4 focus groups with 15 postdoctoral researchers, lecturers and senior lecturers. Results The implementation of Athena SWAN principles was reported to have created social space to address gender inequity and to have highlighted problematic practices to staff. However, a number of factors reduced the programmes potential to impact gender inequity. Gender inequity was reproduced in the programmes enactment as female staff was undertaking a disproportionate amount of Athena SWAN work, with potential negative impacts on individual womens career progression. Early career researchers experienced problems accessing Athena SWAN initiatives. Furthermore, the impact of the programme was perceived to be undermined by wider institutional practices, national policies and societal norms, which are beyond the programmes remit. Conclusions Gender equity programmes have the potential to address inequity. However, paradoxically, they can also unintentionally reproduce and reinforce gender inequity through their enactment. Potential programme impacts may be undermined by barriers to staff availing of career development and training initiatives, and by wider institutional practices, national policies and societal norms.

Stakeholder needs for air pollution and health information

Within the European Commission-supported thematic network project AIRNET, a stakeholder survey was performed to identify key questions and issues of concern for end users regarding air pollution and health information. On the whole, survey respondents typically asked general questions concerning air pollution and health (i.e., regarding the type of pollutant, emission sources, monitoring, and health impact). Furthermore, an overwhelming response across all stakeholder categories was not the unavailability of information sources to inform policy, but the lack of time available to read and absorb all the information. Overall, the respondents expressed their preference for information that is (1) presented as short and clear overviews, (2) ready for policy use by including a practical linkage between the research findings and implementation of public protection, and (3) in a format easily passed on to others.

Closing the Gap Between Science and Policy on Air Pollution and Health

This paper discusses critical issues underlying the interface between air quality science, stakeholder participation, and policy development within the context of the European AIRNET Network multistakeholder project. The paper argues that it is not only the content of air pollution and health issues that stakeholders consider important, but also the process and mechanisms by which the interface operates. A visual representation of the interaction between science, society, and stakeholders in the development, dissemination, and evaluation of effective air quality policy strategies is provided. The paper discusses the role of AIRNET in supporting the Clean Air for Europe (CAFE) program and assesses the AIRNET experience in establishing a network to bridge the gap between air quality policy, stakeholders, the public, and scientific communities.

Citizen Participation as Political Ritual: Towards a Sociological Theorizing of ‘Health Citizenship’

This article examines citizen participation in health research, where funders increasingly seek to promote and define ‘patient and public involvement’ (PPI). In England, the focus of our study, government policy articulates a specific set of meanings attached to PPI that fuse patients’ rights and responsibilities as citizens, as ‘consumers’ and as ‘lay experts’. However, little is known about the meanings those who take part in PPI activities attach to this participation. Drawing on ethnographic data of PPI in three clinical areas (stroke, cancer and pre-term birth) we investigate citizen participation in health research as political ritual. We identify tensions between policy-driven and ground-level performance of citizenship, and use ritual theory to show how such tensions are accommodated in participatory structures. We argue that the ritual performance of PPI neutralizes the transformational potential of citizen participation, and we draw wider sociological implications for citizen participation beyond the health arena.

Meeting report: National workshops for the communication of air pollution and health information : Summary of four workshops in different regions of Europe

AIRNET was a thematic network project (2002–2004) initiated to stimulate the interaction between researchers in air pollution and health in Europe. As part of AIRNET’s communication strategy, a standardized workshop model was developed to organize national meetings on air pollution and health (AIRNET network days). Emphasis was given to tailor the national workshop information and related activities to the specific needs of a wider range of stakeholders (e.g., policy makers, nongovernmental organizations, industry representatives). In this report we present an overview of the results of four workshops held in western, northern, central/eastern, and southern regions of Europe in 2004. Overall, workshop experiences indicated that by actively involving participants in the planning of each meeting, AIRNET helped create an event that addressed participants’ needs and interests. A wide range of communication formats used to discuss air pollution and health also helped stimulate active interaction among participants. Overall, the national workshops held by AIRNET offered a way to improve communication among the different stakeholders. Because a broad stakeholder involvement in decision making can positively affect the development of widely supported policies, such meetings should be continued for Europe and elsewhere.