Patient Involvement in action

Changing football design

Restoration and rehabilitation theme

Research surveys

Events

Stroke is a debilitating condition which affects 1 in 70 people. Return to work or education is often slow and difficult. There is good evidence that rehabilitation is best started early and should be multidisciplinary. For many people this begins in the subacute setting whilst people are in-patients. It has been shown that listening to rhythmic music activates areas of the brain and encourages movement. This project explored the use of music in the subacute setting to benefit from this raised activity and improve participation in exercises. 

The Heathtech Research Centre was asked by the research team to support PPI activity. Our expertise in group facilitation and Involvement activity was seen to be invaluable in informing the research design and produce an application to the Research for Patient Benefit scheme. 

The Patient Involvement happened over a series of 5 group sessions. 4 held online and 1 in person. 10 people with lived experience of stroke took part. The demographics of the group was recorded and included a range of gender and ethnicities.The Involvement was designed to first understand experience of fatigue and management strategies, leading into exploration of music as an aid and how to deliver this in hospital. 

The sessions were focussed on 

·       Experience of fatigue and management 

·       Use of music after stroke 

·       Trying audio equipment and building playlists 

·       Co-design of research methodology 

·       Production of a Plain English Summary 

The impact of the work was the development of an application to fund the codesigned study. The design should improve study recruitment and retention by foreseeing potential issues which the clinical team may not have been aware of. 

Impact was recorded using PIRIT. 

The extended Patient Involvement work has informed the development of an application to the RFPB scheme. The group worked together to develop the methodology and spent time producing the plain English summary to be used in the application. The next step is to identify a named PPI lead and produce the application materials. If successful the study will explore the use of music to improve engagement and rehabilitation and if this leads to improved outcomes for patients in the sub acute setting.  There were benefits to an extended time working with the same people on the development of the project. Building trust with the group and creating a safe space for them to share their experiences allowed a more nuanced and detailed exploration of the topic. Co-production is not a quick or easy process and people should take time to understand their needs and desires of collaborators in the process. In this group, each individual had different experiences common themes were identified to inform priorities for the research. In particular the need to personalise music playlists and playback equipment for individuals will be important even though this may make implementation more difficult.

The project has established strong ongoing links with the research team and the contributors have agreed to support other involvement projects in future.

Building on research carried out by the HRC 

All contributors were rewarded in line with NIHR gjuidelines and their contributions publicly acknowledged. 

Football design could reduce head injuries

A team at Loughborough university have been investigating football and measuring the forces transferred to players’ heads during collisions and heading. Evidence shows that repeated impacts with balls can cause long term brain damage with rates fo chronic Traumatic Encephalopathy, a form of dementia, over 3 times higher in professional players than the general population.

Heading has been banned for under 12’s and adults are encouraged to reduce high-force headers.

The new research builds understanding of the risks and suggests ways of reducing them.

Researcher Dr Leuan Phillips said

"Most excitingly, it gives us the opportunity to make changes to the ball. This energy transfer that we've measured is separate from the big picture of the ball hitting the head and the player's head recoiling. It is over at the very beginning of the collision and represents a very discreet pulse of energy that passes into the brain."

Research survey

Sign up to RHITE

Register for Healthcare Involvement and Technology Evaluation

Our aim is to make sure the right research is done to help patients and the public in the way they need it most. That means we need to hear from you!

By signing up for RHITE, you will receive information about relevant upcoming outreach sessions, research opportunities, workshops and surveys. These are run with clinical researchers and innovators who want to hear about your experience to help guide their research.

This register is delivered in partnership with a University of Cambridge partner, the Outcome Registry Intervention and Operation Network (ORION).

Podcasts

Hear from researchers, innovators patients and carers in the HRC podcast series

photo by Chris Lynch

We are sharing stories from people with experience of brain injury both professional and personal. In recent episodes we have heard from paralympian Steve Brown, the Stroke Association and learnt about a new therapy using taps to improve movement.

PPI showcase

16th June Jeffrey Cheah Centre

Cambridge biomedical campus

Step inside a giant inflatable walk-through brain and discover fun, hands-on activities designed to raise awareness of brain health for people of all ages

various dates across Scotland

Mays’ brain tumour charity night

Stonehouse South Lanarkshiire

18 Jul

British Association of Brain Injury and Complex Case Managers conference.

June 2-3 Birmingham