Edinburgh Clinical Research Facility Patient and Public Involvement Group
As part of the Edinburgh Clinical Research Facility (CRF) public involvement programme at the University of Edinburgh, we are launching a new PPI Champions Initiative. We have appointed 8 clinical staff (clinical research nurses and clinical support workers) as PPI Champions identify need, and design and deliver a public involvement project specific to their own area of work. The Champions will be seconded from their posts for 8 hours a month for a year to work with Allison Worth (Patient and Public Involvement Advisor) and the CRF Patient Advisory Group to co-produce these projects. We are holding an induction day on 26th April where the Champions and patient group will discuss ideas, identify training needs and discuss objectives and goals for the projects. We aim to introduce the National Standards for Public Involvement to the Champions at this first meeting to provide a foundation for their activities from the start, as well as a benchmark for identifying success. It will also provide an opportunity to road-test the standards with a group of clinical research staff new to public involvement. We will build in an evaluation of the utility of the standards to our overall evaluation of the PPI Champions initiative. Allison Worth
Royal Infirmary of Edinburgh, Emergency Department Patient and Public Involvement Group
Our vision is to achieve eaningful PPI activities for research studies conducted within the context of the Emergency Department. This is a challenging area to conduct research so it is important to ensure that we involve patients and the public in research projects from the conception of projects to help advice on the design, burden and importantly whether or not the research question is relevant and important to patients. The team value the patient voice and want to listen to this in order to develop and improve the standard of research conducted. The PPI Group are a valuable resource to ensure research is moving forward in a way that members of the general public feel productive and involved in. Rachel O’Brien
Edinburgh Critical Care Research Group
We intend to put the standards into practice through the ongoing development of our Patient and Public Involvement (PPI) work with Critical Care Research. The standards will be used to guide us in the formal establishment of a PPI group in critical care, who will be able to advise us on different aspects of our research. We will also apply the standards to PPI in current and new research projects. Corrienne McCulloch
NRS Primary Care Network Public and Patient Involvement Group
The NRS Primary Care Network Public and Patient Involvement Group (PPI) is based at the University of Glasgow. We help to recruit patients into primary care research and advise researchers. The PPI Group has ten members and has been running for just over two years. A PPI co-ordinator, Tracy Ibbotson, facilitates the group. The group will use the National Standards as a guide to get more people involved in research and make the group membership more diverse. In February 2018, we held a brainstorming session with the aim of generating suggestions to implement the National Standards. We will review these suggestions over the following 12 months to adapt the National Standards to suit our current and future members. WE will share these experiences with our colleagues in the College of Medical, Veterinary and Life Sciences to ensure that research is carried out in the best interests of patients and meets the needs of the public. It will also support strategies to embed PPI by supporting projects and producing resources Tracy Ibbotson
Edinburgh Centre for Research on the Experience of Dementia, University of Edinburgh
Going to the toilet is a universal human need and a core consideration when travelling and accessing the community, yet its private and sensitive nature renders it invisible in debates and actions to address social inclusion. Barriers are wide ranging and vary across different conditions making it difficult for the transport industry to meet diverse, and often conflicting, needs. Our objective is to find solutions for designing inclusive, accessible, and findable toilets that enable travel and participation for all, to help as many people as possible to feel confident that they can go to the toilet whilst travelling. This is a co-production initiative in three main phases, funded by Disability Research on Independent Living and Learning. It brings together members of the public with academics and experts in co-production, participatory and community action and involves people living with dementia and people living with a range of disabilities as participant co-researchers. The co-researchers are using their own phones or cameras to gather real-time photographic and video images of toilets and signage in city and rural locations, e.g. airports and railway stations. The approach eliminates the need to rely on memory for data collection and will ensure that people with a range of impairments, including cognitive impairments, can be fully involved as participants. We are using series of Gatherings at different locations in Scotland to bring all the project partners and participants together. The Gatherings offer a focal point for recruitment and training, collective data analysis, and ultimately, an exhibition of findings. Gill Mathews
Centre for Cardiovascular Sciences, University of Edinburgh
We plan to incorporate the new NIHR national standards throughout the development of our cardiology research public and patient involvement panel. We aim to use these standards as a guide in the early stages of establishing our panel. We will also use the standards to monitor our work and to ensure we conduct our patient and public involvement to a high standard. Stacey Stewart
Edinburgh Napier University
There are two key ways in which I intend to put the standards in practice.
(1) in relation to my research/service development among survivors of critical illness: this has a strong focus on co-production with patients including, for example, an experience-based website that supports self-management during recovery, a patient and family support group and public engagement activities.I want to embed these standards within and throughout my programme of work.
(2) promoting PPI standards within the School (Health & Social Care at Edinburgh Napier University).There is currently no standardised or strategic focus on PPI in relation to research, impact, innovation/enterprise, etc and I am keen to take a role in pushing this forward among our research, ethics and postgraduate community. Dr Pam Ramsay