National Standards for Public Involvement in Research Test Bed Projects Name Asthma UK Centre for Applied Research

Brief description The focus of the Asthma UK Centre for Applied Research (AUKCAR) is on improving treatment and care for people living with asthma. The Asthma UK Centre for Applied Research is a collaborative venture between people affected by asthma, universities from across the UK, Asthma UK, healthcare professionals, NHS partners and other organisations. The Centre is supported by a UK-wide Patient and Public Involvement (PPI) Platform and is led by Directors Professor Aziz Sheikh of the University of Edinburgh, and Professor Chris Griffiths of Queen Mary University of London. The PPI Platform supports researchers across the Centre to involve people affected by asthma in every step of the research and works closely to ensure the strategic direction of the Centre is relevant for those affected by asthma. AUKCAR will build on current infrastructure to pilot the PPI Standards. The project will be co-developed and delivered by PPI volunteer leads and researchers.

Standards covered All six standards

Contact Melissa Goodbourn Email: [email protected] Tel: 0131 650 4617

Name Clinical Research & Innovation Office, Sheffield Teaching Hospitals NHS Foundation Trust

Brief description Our vision is to achieve outstanding and meaningful patient and public involvement (PPI) activities throughout the research cycle across all our research activities. Despite our comprehensive infrastructure of PPI panels, we must ensure there is diversity of

representation, and that opportunities to be involved are more visible to more people. To ensure long lasting relationships between researchers and PPI panels, two-way feedback is crucial and is an area highlighted for improvement in our annual Impact Framework. With this in mind, the 3 main elements to our project are: 1) Co-designing the section of our website that is aimed at a public audience 2) Increasing the diversity of representations on panels and involving individual groups who are harder to reach 3) Ensuring regular feedback from researchers to PPI panels about their involvement activities To achieve this, we will involve our existing PPI panels, Patient Research Ambassadors, researchers, PPI colleagues Trust-wide, and other local groups.

Standards covered One standard: Communications

Contact: Lucy Wasinski Email: [email protected]

Name Implementing the New Standards for Public Involvement in Research Environments (INSPIRE), Keele University

Brief Description By implementing the new National Standards for Public Involvement in Research, we will assess and improve the quality of Public Involvement at the Research Institute for Primary Care and Health Sciences and Keele Clinical Trials Unit, Keele University. Working in partnership with our Research User Group, the NIHR School for Primary Care Research, NIHR Research Design Service West Midlands, and the West Midlands regional public involvement network (PILAR), this co-produced project will: ● Implement and test all six National Standards throughout a Research Institute. ● Use the Standards as a mechanism for reflecting on current practice ● Assess the impact of implementing the Standards on improving the quality and visibility of public involvement practices ● Ensure successes and learning are shared with regional and national partners throughout the lifecycle of the project and beyond

Standards covered All six standards

Contact Dr Steven Blackburn Email: [email protected] Tel: 01782 734846 Website: https://www.keele.ac.uk/ppie/ Twitter: @keelePPI / #KeeleINSPIRE

Name Kidney Patient Involvement Network (KPIN)

Brief description Within the KPIN team (co-led by patients and professionals) there is real life established and applied expertise of public/patient involvement gathered over many years, not just in research but quality improvement, influencing policy and individual patient care. Kidney disease as a long-term condition lends itself to the development of partnerships between clinicians, patients and carers. KPIN brings together experienced clinicians, patient leaders and researchers who embed public involvement throughout their work. However, we recognise we can do better; help the patient/carer voice to be stronger and provide adequate training to increase the number of patient/public leaders. KPIN plans over the next five years to measure and research what works, share best practice, capture impact and embed INVOLVE high quality standards for patient and carer involvement. We offer not just a test bed but the potential to generate longitudinal evidence of the sustainability of the standards across different practice settings.

Standards covered All six standards

Contact Professor Paula Ormandy Email: [email protected] Tel: 01612950453

Name Northern Ireland Cerebral Palsy Register (NICPR), Queen’s University Belfast

Brief description The Northern Ireland Cerebral Palsy Register (NICPR) is a confidential record of children with cerebral palsy (CP) in Northern Ireland. It provides a systematic approach to monitoring and surveillance of CP in the region and supports research into the condition. NICPR research includes investigating causes of CP, clinical aspects of the condition, and health and social care services for children and young people with CP, and their families. The NICPR aims to involve the public to ensure its research is relevant, useful and disseminated appropriately. As a ‘test-bed’ for the NIHR Standards for Public Involvement we will (i) create a public involvement (PI) group (persons with CP and their family, carers and friends), (ii) collaboratively determine terms of reference, activities and training needs of this PI group, (iii) develop jargon-free communication methods to meet the needs of different audiences, and (iv) record, monitor and evaluate our PI activity.

Standards covered Three standards: Working Together, Communications and Impact

Contact Claire Kerr Email: [email protected] Tel: 028 9097 1616

Name Palliative and End of Life Care Patient and Public Involvement (PPI) research group, School of Medicine, Dentistry and Nursing, University of Glasgow

Brief description We set up a Patient and Public Involvement (PPI) research group last year to promote public participation in Palliative and End of Life Care research in Nursing and Health Care at the University of Glasgow. As a National Standards test-bed project our aim is to increase the scope and diversity of PPI membership and activity. This includes creating meaningful opportunities for PPI members to learn about the research process and to identify their priorities for future projects. The vision is to co-produce a Code of Practice and 3-year forward plan for PPI in Nursing and Health Care research. To support this endeavour, we are building relationships with individuals, community organisations and staff from the Scottish Health Council. Acting as a test-bed project will help to foster this vital work and help us to set a framework for good practice in PPI that can be used across the University.

Standards covered All six standards

Contact Professor Bridget Johnston Tel: 0141 330 3691 Email: [email protected] Dr Gillian Mathews Tel: 0141 330 2628 Email: [email protected]

Name Royal College of Obstetricians and Gynaecologists’ (RCOG) Women’s Network – Public Involvement in O&G Research Prioritisation

Brief description The RCOG Women’s Network, with the support of the College’s Patient & Public Involvement (PPI) team, will test several of the new NIHR standards, using them to plan and implement a robust involvement approach to the College’s research activity. The RCOG’s 12 Clinical Study Groups represent the main sub-specialties within obstetrics and gynaecology. They address research priorities and develop research proposals for funding. The Research Committee then decides which proposals have high priority. The

project will use the new standards to map current PPI practice across the CSGs and Research Committee and identify ways to strengthen and standardise the approach used, implementing changes in practice where needed. This will ensure the views and experiences of O&G service users are central to priority setting and decision making in O&G health research.

Standards covered Three standards: Working Together, Impact and Governance

Contact Matthew Miles, Head of Patient & Public Involvement, RCOG Email: [email protected]

Name Royal College of Speech and Language Therapists (RCSLT) research priorities project

Brief description The Royal College of Speech and Language Therapists (RCSLT) has been working on an exciting research priority setting project in a number of key clinical areas, identifying gaps in the current evidence base and using workshops and consultation surveys to develop research questions that would fill these gaps. We have worked with the National Institute of Health Research (NIHR) on developing priorities for dysphagia and learning disabilities. In the near we future we will be targeting developmental language disorder, aphasia and autism. A key focus of our project is to ensure research priorities are developed collaboratively and that patients and the public are involved throughout the process. We are excited to be involved with the standards development partnership project, and are looking forward to the opportunity to learn from other organisations. Speech and language therapists work with people who have communication and/or swallowing difficulties, therefore we are passionate about ensuring these people are able to, and invited to participate in research and priority setting regardless of these difficulties.

Standards covered Five standards: Inclusive Opportunities, Working Together, Support and Learning, Communications and Impact

Contact Lauren Longhurst, Research and Development Officer Email: [email protected] Tel: 0207 378 3029

Name The Public Programmes team at Manchester University NHS Trust

Brief description The Public Programmes team works strategically and at scale, embedding bespoke Patient and Public Involvement and Engagement (PPIE) across research programmes in Greater Manchester. We work as part of the NIHR Manchester Biomedical Research Centre (MBRC) and the NIHR Manchester Clinical Research Facilities (MCRF). We support researchers and public contributors with varying levels of experience and expertise in PPIE. This way of working represents a unique opportunity to test out PPI Standards across a large research patch and in differing PPIE contexts. Our test bed will integrate the PPI Standards into our existing work and strategic priorities for the Manchester BRC and CRF. Across all the standards, we will ask ourselves: ● How does this standard help us to understand, examine and appraise progress in our PPIE work? ● How might the standard be improved? ● What did we find out about our work from using the standard? ● What utility does a standard have across a range of backgrounds, skills and experience? Our success criteria will reflect different PPIE contexts: First Steps, Everyday Practice, Aiming High.

Standards covered All six standards

Contact: Bella Starling Email: [email protected] Twitter: @researchdialog @ManchesterBRC

Name The Wales School for Social Care Research and CADR (The Centre for Ageing and Dementia Research)

Brief description The Wales School for Social Care Research is funded by Health and Care Research Wales to support social care research capacity building in ways that make a tangible difference to social care in Wales. The School will benefit social care practitioners and the social care sector in assisting them in taking forward their research and evidence based practice aspirations, and benefit research providers in supporting them engage with the social care sector. Building on existing internationally recognised and transformative research networks the Centre for Ageing and Dementia Research (CADR) is a world class research centre addressing key internationally important questions in ageing and dementia. The Centre integrates multi-disciplinary activity and develops areas of expertise from biological,

through psycho-social and environmental, to social policy in ageing and dementia.

Standards covered All six standards

Contact: Richenda Leonard Email: [email protected] Tel: 01792 604922 Twitter: @WalesSSCR / @CadrProgramme