Patient & Public Involvement & Engagement (PPIE)
PPIE Officer - Grace Edwards
This role is shared with the NIHR Sheffield CRF, enabling a cohesive strategy for PPIE to be established across the infrastructures.
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.
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.
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.
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 Stroke and Aphasia PPI Group website
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
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 joined us as a 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.
Patient and Public Involvement and Engagement (PPIE) Strategy 2022-2027
The NIHR Sheffield BRC has collaborated with the NIHR Sheffield CRF to develop a joint strategy for PPIE, which will be implemented between 2022-2027. The full PPIE strategy can be read here.
Our vision is to embed PPIE across the lifecycle of clinical research that we conduct, from informing research priorities to study design and through to how we disseminate results. We want to ensure the trials we deliver serve the needs of patients, the community and the NHS, and want our findings to be communicated effectively.
PPI is at varying levels of activity and maturity throughout our growing research organisations in Sheffield. We have 18 well established Patient Panels at our NHS Trust and community links built around specific projects where high-quality involvement and sustained partnerships have demonstrated substantive impacts. We have also identified some areas for improvement.
We plan to learn from best practice examples and the UK National Standards for PPI to: (1) inform our approach; (2) provide training, guidance and resources for involvement throughout the research cycle and (3) to develop an outreach programme to widen research awareness.
Over the next 5 years we will build on our existing involvement capacity, fostering new links with Primary Care Sheffield and a core Equality, Diversity, and Inclusion strategy to widen research awareness and involvement to include more underserved groups in the region. We aim to diversify, broaden, and deepen patient and public involvement in our research.