Regional Working in the East of England: Using the UK National Standards for Public Involvement

Plain English summary: Involving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors.The aim of this paper is to use the recently developed UK National Standards for Public Involvement to structure our thinking about what worked well and what did not, within our recently completed study. We believe this paper is one of the first to use the National Standards to structure a retrospective reflection on PPI within a study.Our findings showed that there are benefits of regional working, including easier access to public members and bringing together researchers, public members and those who run PPI groups for research collaboration. The main challenges included involvement of people before studies are funded and working across organisations with different payment processes.The National Standards for Public Involvement has provided a useful framework to consider how best to involve patients and members of the public in research and could be a helpful structure to reflect on successes and challenges in individual projects and also regional, national or international comparisons of PPI in research. Abstract: Background Regional networks of Patient and Public Involvement (PPI) organisations, including academic institutions, health and social care services, charities, patient and public groups and individuals, can play an important part in carrying out health research. In the UK, recommendations by the National Institute of Health Research (NIHR) encourage the use of regional, collaborative networks with shared resources and training. Methods The newly developed UK National Standards for Public Involvement were used as a framework for a retrospective reflection of PPI within a recently completed research study which focused on feedback from researchers to PPI contributors. PPI contributors, those running PPI groups (PPI leads) and researchers involved in the study have contributed to this reflection by completing evaluation forms throughout the research alongside notes of meetings and co-authors' final reflections. Results Results revealed a number of successes where the regional network was particularly useful in bringing together PPI contributors, those who lead PPI groups and researchers. The regional network helped researchers to get in touch with patients and members of the public. Challenges included involving people before funding and bureaucratic and financial barriers when working across different organisations in the region. The importance of working together in flexible, informal ways was key and on-going support for the PPI contributors was vital for continued involvement, including emotional support not just monetary. The first four National Standards of inclusive opportunities, working together, support and learning and communications were particularly useful as means of structuring our reflections. Conclusions To our knowledge, this is one of the first research studies to use the UK National Standards for Public Involvement as a framework to identify what worked well and the challenges of PPI processes. It is suggested that as more reflective papers are published and the National Standards are more widely used in the UK, many lessons can be learnt and shared on how to improve our Patient and Public Involvement within research studies. Evaluations or reflections such as these can further enhance our understanding of PPI with implications for regional, national and international comparisons.Peer reviewedFinal Published versio

A REVIEW ON PUBLIC PARTICIPATION IN ENVIRONMENTAL IMPACT ASSESSMENT IN MALAYSIA

Environmental Impact Assessment (EIA) was introduced to measure the benefit or cost from physical development to the public and community. In Malaysia, EIA was initiated in 1988 as a mandatory legislative requirement to protect and enhance the quality of the environment through licensing, setting of standards, coordination of research and dissemination of information to the public. Public involvement in assessment period is vital, and this conceptual paper identifies that there are three levels of participation in EIA. However, public participation in EIA in Malaysia, in general, is only instrumental due to weaknesses in regulation, lack of awareness and expertise among the public. This further raises the question of effective EIA implementation when public representation is characterized by pseudo participation and select involvement rather than broad participation of all community members, which is an important prerequisite for effective public participation.EIA, community involvement, public participation process

Nanotechnology Oversight: An Agenda for the New Administration

Identifies how current laws can be applied or modified to provide needed oversight of nanotechnology and materials for public health and environmental protection. Calls for more funding for risk research, coordinated regulation, and public involvement

Public Participation in Resolving Environmental Disputes and the Problem of Representativeness

Dr. Allen, the symposium organizer, reviews recent .efforts to increase public involvement in environmental disputes

Insecure Communities: Latino Perceptions of Police Involvement in Immigration Enforcement

This report presents findings from a survey of Latinos regarding their perceptions of law enforcement authorities in light of the greater involvement of police in immigration enforcement. Lake Research Partners designed and administered a randomized telephone survey of 2,004 Latinos living in the counties of Cook (Chicago), Harris (Houston), Los Angeles, and Maricopa (Phoenix).The survey was designed to assess the impact of police involvement in immigration enforcement on Latinos' perceptions of public safety and their willingness to contact the police when crimes have been committed. The survey was conducted in English and Spanish by professional interviewers during the period November 17 to December 10, 2012.Survey results indicate that the increased involvement of police in immigration enforcement has significantly heightened the fears many Latinos have of the police, contributing to their social isolation and exacerbating their mistrust of law enforcement authorities.These findings reveal one of the unintended consequences of the involvement of state and local police in immigration enforcement -- a reduction in public safety as Latinos' mistrust of the police increases as a result of the involvement of police in immigration enforcement

Reflections and Experiences of a Co-Researcher involved in a Renal Research Study

Background Patient and Public Involvement (PPI) is seen as a prerequisite for health research. However, current Patient and public involvement literature has noted a paucity of recording of patient and public involvement within research studies. There have been calls for more recordings and reflections, specifically on impact. Renal medicine has also had similar criticisms and any reflections on patient and public involvement has usually been from the viewpoint of the researcher. Roles of patient and public involvement can vary greatly from sitting on an Advisory Group to analysing data. Different PPI roles have been described within studies; one being a co-researcher. However, the role of the co-researcher is largely undefined and appears to vary from study to study. Methods The aims of this paper are to share one first time co-researcher's reflections on the impact of PPI within a mixed methods (non-clinical trial) renal research study. A retrospective, reflective approach was taken using data available to the co-researcher as part of the day-to-day research activity. Electronic correspondence and documents such as meeting notes, minutes, interview thematic analysis and comments on documents were re-examined. The co-researcher led on writing this paper. Results This paper offers a broad definition of the role of the co-researcher. The co-researcher reflects on undertaking and leading on the thematic analysis of interview transcripts, something she had not previously done before. The co-researcher identified a number of key themes; the differences in time and responsibility between being a coresearcher and an Advisory Group member; how the role evolved and involvement activities could match the co-researchers strengths (and the need for flexibility); the need for training and support and lastly, the time commitment. It was also noted that it is preferable that a co-researcher needs to be involved from the very beginning of the grant application. Conclusions The reflections, voices and views of those undertaking PPI has been largely underrepresented in the literature. The role of co-researcher was seen to be rewarding but demanding, requiring a large time commitment. It is hoped that the learning from sharing this experience will encourage others to undertake this role, and encourage researchers to reflect on the needs of those involved.Peer reviewedFinal Published versio

Service delivery

Nottingham Business School reports on its involvement in a county-wide review of community risk and frontline fire service cover, involving public consultation