Patient & Public Involvement & Engagement (PPIE)
What is PPIE?
We define public involvement in research as being research that is carried out with or by members of the public, rather than something that is done to, about or for them.
The involvement of patients and carers is vitally important in making sure our activities are relevant to the people our research affects.
At every stage of the research cycle, from helping to decide what is an important research question, to how best we can carry out that research, and how we communicate the results, patient and public involvement helps to improve research quality and accessibility.
We are working to establish research advisory groups modelled on the success of existing local groups with stable memberships meeting regularly. This enables longer-term collaborative relationships with researchers to develop.
We are also part of a mapping exercise collecting information from across the network of 20 BRCs and beyond on how the impact of PPI can be evaluated.
We invite PPI representatives to join the Sheffield BRC Executive Board as members (where PPI is a standing item on the meeting agenda), and to join our External Scientific Advisory Group, to help steer the PPI strategy and add value for research prioritisation.
Local Research Advisory Groups
Sheffield Motor Neuron Disorders Research Advisory Group
Sheffield Motor Neuron Disorders Research Advisory Group (SMNDRAG) are a group of MND patients, carers, past carers and associates who meet quarterly in SITraN and hear from researchers on a wide range of projects.
Click here to visit the website and find out more information.
Sheffield Multiple Sclerosis Research Advisory Group
Sheffield Multiple Sclerosis Research Advisory Group (SMSRAG) welcomes new members from all backgrounds to come together with the common goal of enhancing research into addressing Multiple Sclerosis.
Members are invited to attend face to face meetings and will receive scheduled updates between meetings via email or letter about group activities.
Click here to visit the website and find out more information.
Dementia Research Advisory Group South Yorkshire
The Dementia Research Advisory Group South Yorkshire (DRAiSY) has members from a variety of backgrounds, united to empower and enable Patient and Public Involvement in research to fight against Dementia.
Members are invited to attend quarterly meetings and will receive updates via email or letter about group activities. New members are always welcome.
Click here to visit the website and find out more information.
Stroke & Aphasia Public Involvement Group
The Stroke and Aphasia Patient and Public Involvement Group are an invested group of individuals who have either suffered from stroke or aphasia or have been affected by the conditions in some way.
Their meetings are held online once a month, where they review and provide input to studies proposed by investigators from Sheffield and South Yorkshire.
They also lead on ensuring appropriate patient facing documents can be understood by those with language difficulties due to neurological disorders.
New members are always welcome.
Click here to visit the website and find out more information.
Parkinson's UK - Yorkshire and Humber Research Interest Group
Parkinson’s UK host quarterly Yorkshire and Humber Research Interest Group meetings in a rotation of locations across the region. They provide support to Parkinson’s researchers and arrange events for local people to learn about Parkinson’s research.
New members are welcome and skype facilities are available to accommodate remote access.
Contact lnash@parkinsons.org.uk for more information.
Our Patient Representatives
Colette Edwards has been a patient representative with the NIHR Sheffield Biomedical Research Centre since 2018. She is a lecturer in Occupation Health at Sheffield Hallam University, and previously worked as an Occupational Therapist specialising in neurology. She was diagnosed with multiple sclerosis in 2011 and underwent Autologous Haematopoietic Stem Cell Transplantation (AHSCT) in 2016. She is now researching the psychological impact of AHSCT in patients for a PhD project to better understand the long-term psycho-social experience of the treatment and support patients through it.
Professor Adewale Adebajo, a Consultant Rheumatologist and Associate Medical Director at Barnsley NHS Foundation Trust was recognised in the Queen’s honours 2021 with an MBE for his services to promoting inclusive patient and public involvement in health research. He has made important contributions to health services research focussing on musculoskeletal conditions. Ade worked with us to develop an Equality, Diversity, and Inclusion programme for our BRC reapplication for 2022 – 2027. He will bring his perspective as a patient suffering a stroke in 2015 followed by an intensive year of rehab to help shape our priorities for stroke research and promoting inclusivity and accessibility of clinical research across the BRC. He was a recent keynote speaker as a patient representative at the United Kingdom Stroke Forum alongside Professor Chris Whitty.
Pamela Irvine joins us as a new patient representative in 2022. She and her late husband both worked as pharmacists. Pam was diagnosed with Parkinson’s in 2017 but has been living with the symptoms for 12 years. She now helps others by talking to newly diagnosed Parkinson’s patients to help them to work through what this new diagnosis means and understand how they can still navigate an active life. She was the first patient to complete the flagship BRC clinical trial, the ‘UP Study’ assessing UDCA in Parkinson’s.
Summaries of recently published research results
To support our patients and the public to understand and interpret recently published papers of research, which often contain very complex scientific concepts and technical terminology, researchers at SITraN have developed a "Hot Off The Press" resource of research summaries that are written in layman’s terms, or lay summaries.
These summaries aim to provide an overview of some of the biggest publications in an easy-to-understand way, using simple language and removing the scientific jargon.
Visit the Hot Off The Press website to view the lay summaries.