ADVANCING PPIE IN THE MIDLANDS: SHARING BEST PRACTICE
Following the success of the 2021 Midlands Patient and Public Involvement and Engagement (PPIE) Event, we returned this year with another event which focused on sharing best practice.
Entitled, ‘Advancing PPIE in the Midlands: sharing best practice’, the event offered greater insights into ongoing and new areas of PPIE.
During the three-day conference, a variety of speakers talked on various aspects of PPIE including Public Involvement in Social Care, the Participant in Research Experience survey, the Race Equality Framework, Leadership in PPIE and many more! There were also question and answer sessions at the end of each talk in order for attendees to be able to ask questions about the great work that is happening across the region!
View the agenda here.
SESSION RECORDINGS:
To turn subtitles on please click on the ‘settings’ button on the bottom of the video and click on ‘subtitles’ and then click ‘English (auto-generated) for each video.
WEDNESDAY MORNING SESSIONS:
WELCOME AND INTRODUCTION
Professor Ian Hall
NIHR and public engagement
Jeremy Taylor
Jeremy, Director for Public Voice at NIHR, will present an overview of how NIHR ensures public engagement in health and care research. He will present latest developments and thinking at NIHR concerning engagement between the research world and people and communities, and he will invite questions.
(watch from 08:50)
WEDNESDAY AFTERNOON SESSIONs:
GENERAL INTRODUCTION TO PPIE IN RESEARCH
Steven Blackburn
The role and value of public involvement in research and how the RDS can support funding applications.
Delivering the Participant in Research Experience Survey
Mary-Anne Darby & Steve Clapperton
Join us to find out more about the Participant in Research Experience Survey (PRES). You will be given an introduction to what the PRES is, find out about the results and how they are used, and given an overview of how PRES is being delivered across your region.
(watch from 39:50)
The Centre for Ethnic Health Research: The Importance of Cultural Competence in Research
Julian Harrison
Cultural Competence in research and health and social care is vital to addressing health disparities that people of culturally diverse backgrounds often experience. Understanding and becoming more self-aware of different cultures can improve the diversity and inclusivity of research and health care to ensure that all patients get the care they need to live a healthier life.
The Centre for Ethnic Health Research has a wealth of experience of working with diverse communities and tackling health inequalities. The team have developed various training packages and resources which support individuals becoming more culturally competent and effective with their community engagement. Join us to hear more about the importance of Cultural Competence and how The Centre for Ethnic Health can support you in responding to the varied needs of our population.
(watch from 1:18:25)
Involving young people in health and social care research
Niyah Campbell
Young people are generally under-represented in research and public and patient involvement. Within this session, Niyah Campbell will provide an overview of the work that he has done to involve young people in health and social care research and explore some of the key considerations that have be made to effectively involve young people. As well as presenting on his experience and perspective, Niyah will look to facilitate a group discussion on barriers and facilitators to youth involvement with attendees.
(watch from 1:55:51)
THURSDAY MORNING SESSIONS:
Race Equality Framework Experiences using Research Equality Framework in PPIE: Keele University and Birmingham Pilot
Fay Scott, Natalie Knight, Victoria Day, Laura Chapman & Sobia Shaw
This talk is aimed at everyone attending (PPI professionals and public contributors) to inform them of the work we decided to do by asking to be part of the pilot; realising BRC alone was not enough so involvement of many organisations in the region, project management and the regional/collaborative nature of this work. The scale and scope meant our Self-Assessment Oversight Team was born. We want to ensure we share the Involvement of all other colleagues and public contributors threaded through it all – from inception of agreeing to pilot, holding discussion groups and establishing a PPI working group.
An introduction to the Research Design Service East Midlands EDI Toolkit: a resource for researchers to embed EDI their research design and conduct of their research.
Reflections on developing research in LGBTQ+ communities living with dementia: the practicalities, benefits and challenges.
Rebecca Barnes, Naina Patel & Claudio Di Lorito
(watch from 1:44:15)
THURSDAY AFTERNOON SESSIONS:
Working with Community Researchers
Becky Pritchard
Find out about the challenges, solutions and benefits of working with novice researchers drawn from seldom heard communities in this workshop exploring practical ways forward.
We Are Research Volunteers; involving patients in research delivery
Kate Frost, Liz Tibbett & a research volunteer
Opportunities to get involved in research have predominantly focused on advising on concept, design and oversight. Although Nottingham University Hospitals NHS Trust has a long tradition of volunteering, there has never been a programme in clinical research for volunteers to directly support clinical research delivery teams. Join us to hear how the Research Volunteer role was developed and activities to date – the session will be led by Kate Frost, Head of PPIE at Nottingham University Hospitals NHS Trust, PPI Manager Liz Tibbett, and 2 of our fantastic Research Volunteers. This session is suitable for patients, carers, the public including research/non research staff.
(watch from 56:06)
Patient and Public Leadership: how to develop skills and confidence to contribute effectively
Shahnaz Aziz & Teresa Burgoyne
Public members are often invited to take part in research and health and care services with little consideration given to the experience, insight and skills they can bring, which can have a detrimental impact on experience and outcomes. This session will share the approach the East Midlands Academic Health Science Network (EMAHSN) have taken to develop the skills and confidence of public members to be more effective in their patient and citizen leadership roles. It is aimed at staff and public contributors who are interested in learning about how public contributor skills can be developed beyond participation roles.
(watch from 1:37:03)
FRIDAY MORNING SESSIONS:
Involving the public in Equality Impact Assessment processes
Shahnaz Aziz & Sandra Paget
The impact of Covid-19 and global events have put a spotlight on discrimination and inequalities, and the need for health and social care research, innovations and transformations to look at research and services more through an equalities lens. One approach is the use of Equality Impact Assessments, and when completed well these can be a great tool to surface and mitigate inequalities. This interactive session shares the the approach the East Midlands Academic Health Science Network (EMAHSN) are taking to ensure greater public scrutiny on their Equality Analysis process through their Expert Peoples Panel – a group of people from protected groups and wider who offer independent advice and guidance ensuring better quality Equality Analysis.
Enabling Digital Co-production: a framework to assess the differing impacts of digital PPI
Rebecca Woodcock, Maurico Molinari Ulate & Isabelle Smith
The rapid transition to digital working, accelerated due to the response to the COVID-19 pandemic, has impacted the involvement of patients and public in research, albeit not in a uniform way. Presenting a narrative of co-production, we will explore the journey of one such Participant and Public Involvement (PPI) group focused on digital mental health, resulting in the 'E-nabling Digital Co-production' Framework; a simple mechanism for the analysis of e-PPI constraints and benefits. We will introduce how this framework was refined within the context of PPI within dementia research and what we learnt about. We finish by reflecting on future uses for the framework, including next steps in understanding digital involvement for Young People. We consider how this shift to digital working may serve to either consolidate or subvert existing power imbalances between research and patient and public.
(watch from 46:52)
FRIDAY MIDDAY SESSION:
Bringing hearing and mental health together
Dr Adele Horobin, Emma Broome, Corinne Hendy, Ethne Heffman & Claire Klaza
Taking a ‘whole person’ outlook to healthcare requires addressing mental and physical health together. This should be reflected in research and public involvement structures. This session will highlight complementary themes of coproduction and working across hearing and mental health.
Here, we present on setting up a public involvement group for hearing and mental health. This work is taking the lead from our public involvement members with relevant lived experience.
We finish with examples of research that illustrate coproduction and cross-disciplinary working.
This session is aimed at researchers who wish to work more closely with public research partners, and across health disciplines. Also, public members and PPI managers interested in approaches to coproduction and bringing physical and mental health together.
FRIDAY AFTERNOON SESSIONS:
Setting up groups: getting started
Laura Chapman, Tracy Gazeley & Margaret O’Hara
Hear from people from across the region with a wealth of experience of involving people in health research. Learn from their experiences of setting up and running a variety of active PPI groups for different purposes and what makes for a successful group in their opinion.
Developing an Evidence-Base for Public Involvement – Why we all need to Get a GRIPP2!
Magdalena Skrybant & Sophie Staniszewska
Everyone in the Public Involvement community sets out to do the highest-quality public involvement. To do this, we need to develop a strong evidence base so we can build on ‘lessons learnt’. We can use this evidence to take inspiration from examples of fantastic public involvement and make sure we don’t repeat things that have been tried but haven’t worked so well.
What is the session about?
This session is practical session designed to support you to use the Guidance for Reporting Involvement of Patients and the Public – GRIPP2.
During the session, we will:
1. Provide a brief overview of GRIPP2 and how it was developed
2. Explain what GRIPP2 is and the two different forms (Short Form/Long Form)
3. Share guidance and practical tips on how to complete GRIPP2
4. Discuss future visions for GRIPP2
(watch from 50:25)
Panel Q&A session
Amanda Roberts
Amanda Roberts has no formal research training but she has been on various NIHR funding panels (RfPB, HTA and PGfAR), charity research funding panels and UK Dermatology Clinical Trials Network committees as a lay voice. She has on-going involvement with a couple of European wide EC funded trials, is currently a lay co-applicant on two NIHR funded clinical trials and a co-applicant for a MRC health data trial. In September, Amanda is about to embark on a steep learning curve as a co-Principle Lead for a NIHR programme grant using citizen science to shape and answer important clinical questions for those living with eczema.
Sandra Paget
Sandra Paget, is an experienced lay reviewer for the National Institute of Health Research and has been a lay member of several funding panels: Research for Patient Benefit (South Central), Programme Grants for Applied Research and a Core Member of the Policy Research Programme’s funding advisory group, June 2014 - May 2018. She was a PPI member of the Research, Design Service South Central's Working Group for Public Patient Participation.
She lives in the East Midlands and is a public contributor to the National Institute for Health Research (NIHR) Applied Research Collaboration-East Midlands (ARC-EM)Her current PPI activties are Mapping the Innovation landscape,, Strategic Decision Making and Co-production and The Equality Impact Assessment projects with ARC-EM. She is also a Lay Member of the Management Group of the Supporting Adult Social Care Innovation Study (SASCI) project, London School of Economics.
She was a service user member of the Department of Health's Advisory Group for implementation research for the National Service Framework for Long Term Neurological Conditions (2004-2011). In 2005 she was a founder member of the Lay steering group for the Movement Science Group at Oxford Brooks University. She has co-authored two publications, Physical Activity for People with Neurological Conditions http://www.shs.brookes.ac.uk/lifepassh and Lost Voices, Missed Opportunities: A guide to inclusion and diversity for researchers, Research Design Service South Central.
Steven Blackburn
Steven is an Associate Professor in the Institute of Applied Health Research, University of Birmingham. An applied health researcher, with specific expertise in Patient and Public Involvement and Engagement. Steven is the lead for public involvement in NIHR Research Design Service (RDS) West Midlands. Current Chair of the national RDS Public Involvement Community and Public Involvement Lead for the RDS National Office, responsible for the delivery of a national RDS Public Involvement Strategy. He has contributed to several NIHR initiatives to improve the quality of PPIE.
(watch from 1:36:42)