Regional working in the East of England: using the UK National Standards for Public Involvement

Abstract

Plain English summaryInvolving 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 vi...

The role of patient and public involvement leads in facilitating feedback: “invisible work”

“…The paper has highlighted the importance of the PPI lead role in implementing feedback. This study has demonstrated that working in a collaborative manner with PPI leads, PPI contributors and researchers is important to the success of feedback and to the whole experience of being involved in the PPI process [23]. Some of the PPI groups involved in this study have successfully introduced new feedback processes which are still being used.…”

“…PPI contributors played a major role in this study from initiating the research idea, data collection, analysis to dissemination: this involvement has already been reported, [8,23]. PPI contributors were involved in this second stage through input in meetings, co-designing the PPI feedback tools and in the co-produced 'Guidance for Researchers: PPI Feedback' [24].…”

“…The first stage (2016-2017) of the research study explored the definition, frequency and importance of feedback and is reported in [8,23] and the second stage (2017-2018) (reported in this paper) designed and implemented local feedback processes or tools within six PPI groups. The aim of this paper is to describe the introduction of co-designed PPI feedback tools and processes, with a particular focus on the role and remit of the PPI lead.…”

“…At the start of the study, all six PPI leads stated that they did not have routine feedback processes in place for their PPI groups and that feedback to PPI contributors could be improved. As part of the research study, a workshop was held which gave the opportunity for each PPI lead, up to two researchers and two PPI contributors from each of the PPI groups to work together to decide how they were going to improve feedback (see [23]). A total of 4 PPI leads, 9 PPI contributors and 9 researchers attended the workshop which was facilitated by research team members ( Fig.…”

Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects

“…11 Transgender Equality Network Ireland, Dublin, Ireland. 12 DCU School of Nursing, Psychotherapy and Community Health, Dublin, Ireland. 13 Irish Platform for Patient Organisations, Science and Industry, Dublin, Ireland.…”