UKABIF nice as ‘PPIE’ as researchers cook up a storm in the UK’s new £9.5m TBI research pot.
UKABIF nice as ‘PPIE’ as researchers cook up a storm in the UK’s new £9.5m TBI research pot.
We will work to ensure the voices of patients, families and carers are heard and used to shape the research. Their experiences are crucial to the whole initiative. 
UKABIF
The drive to improve the lives of people with traumatic brain injury (TBI) has shifted up a gear with the launch of a £9.5 million UK-wide research hub.
The United Kingdom Acquired Brain Injury Forum (UKABIF) will be the patient’s voice on the new TBI-Reporter platform which is being jointly funded by:
- Alzheimer’s Research UK
- Medical Research Council (MRC)
- Ministry of Defence
- National Institute for Health and Care Research
TBI-Reporter will bring together TBI research experts from across the country to lead studies into TBI in all ages, from infancy to older people.
It will cover all aspects of TBI, including concussion, plus support research into currently under-studied sectors of society, such as homeless people and victims of domestic violence.
And it will link with existing National Health Service TBI datasets, including the UK Rehabilitation Outcomes Collaborative, and international datasets via the International Initiative for TBI Research.
There will also be a network of NHS specialist neuroscience hospitals carrying out studies into novel TBI diagnostic processes and treatments.
Piece of the PPIE
UKABIF’s role, leading the ‘Patient and Public Involvement and Engagement (PPIE)’ part of the platform, will include setting up a PPIE panel of up to 12 members.
These members will include people with different lived experiences of a TBI, and, among those, there will also be representatives of other vulnerable groups.
UKABIF’s Executive Director, Chloe Hayward, said the charity was “delighted to be part of this exciting and potentially life-changing research platform.”
She added, “We know that there is still so much to do to improve the diagnosis and treatment of a brain injury.
“UKABIF has a broad network linked to many individuals, patient groups and third-sector organisations.
“We will work to ensure the voices of patients, families and carers are heard and used to shape the research. Their experiences are crucial to the whole initiative.”
University Challenge
TBI-Reporter will coordinate clinical studies and the collection of research data in collaboration with Health Data Research UK.
The platform is being led by Cambridge University in coordination with the universities of Glasgow, Sheffield, Imperial College London, and Swansea.
TBI ranks as the leading cause of disability and death in people under 40 in the UK and can cause a broad range of symptoms and challenges, some life-long.
But it’s hoped that by pooling data from individual research projects, faster progress will be made in:
- Understanding and predicting TBI’s effects
- Identifying new treatments
- Improving patient care and rehabilitation.
MRC Chief Executive, Professor John Iredale said, “We recognise the devastating impacts traumatic brain injury can have for its survivors and those who care for them and are determined to improve the status quo.
“This [£9.5m] award will capitalise on the UK’s unique scientific strengths to see research into TBI accelerated on a scale not seen before.
“This will lead to the discoveries we need to give survivors of TBI all around the world a much more hopeful future.”
Further reading
Find out how our neuro occupational therapists improve the lives of people affected by brain injury and other neurological disorders, here: What we do: Occupational Therapy Brain Injury Services
