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, thus enabling 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.
Our Local Research Advisory Groups
Sheffield Motor Neuron Disease Research Advisory Group
Sheffield Motor Neurone 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.
Contact email@example.com for more information.
South Yorkshire Dementia Research Advisory Group
The South Yorkshire Dementia Research Advisory Group (SYDEMRAG) has members from a variety of backgrounds, united by the common goal of fighting Dementia. Quarterly meetings are held in SITraN hearing from scientists and clinicians and keep in contact via email once per month. New members are always welcome and skype facilities are in place to enable joining a meeting remotely.
Opportunities to get involved can be found by registering interest with Join Dementia Research.
Parkinsons 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 firstname.lastname@example.org for more information.
Stroke and Aphasia Patient and 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. They meet at the National Centre for Sports and Exercise Medicine to 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.
Contact email@example.com for 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 quarterly face to face meetings and will receive scheduled updates between meetings via email or letter about group activities.
If you would like to find out more, please email firstname.lastname@example.org
Lay 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 are aimed to provide an overview of some of the biggest publications in an easy-to-understand way, using simple language and removing the “scientific jargon”.
Follow this link, or check our individual theme pages to view the lay summaries.