Involving patients in stroke research

Guest blog by Dr Madina Kara, Research Awards Manager, The Stroke Association on the benefits of patient involvement in stroke research. This month is ‘Action on Stroke Month‘ which is all about reaching out to stroke survivors and carers to help raise awareness of stroke, for more information please see The Stroke Association’s website.

Service users are the only people who really understand how a condition affects their day to day life. They have a unique insight that allows them to identify and prioritise areas where research is required, as well as to assist with designing the research. Efforts have been made to involve stroke survivors in stroke research and this has helped move the field forward resulting in fewer strokes, better treatment and rehabilitation, but there is still work to be done.

Public involvement in research is on the increase and many funding bodies require grant applicants to demonstrate how service users will be involved in the research project. However, it is important that researchers do not just pay ‘lip service’ to this requirement and recognise the value that service user involvement can bring to research.

Stroke survivors help choose the research that is funded

The Stroke Association Service User Review Panel

The Stroke Association ensures that people affected by stroke have an opportunity to help choose the research that we fund. Through our Service User Review Panel stroke survivors, carers and their family members can review all the applications that have been found to be scientifically sound through our peer-review process. They then rank the applications according to the importance of the research to them.

These rankings are added to those of the Research Awards Committee, made up of scientists and clinicians as well as service user representatives, and the overall top ranking applications are funded.

The Stroke Research Network (SRN) Lay forum

The National Institute for Health Research (NIHR) Stroke Research Network (SRN) brings together researchers, clinicians and people affected by stroke and provides co-ordination, leadership and practical help supporting stroke studies. The SRN have a patient and carer programme and stroke survivors can become involved in the SRN by taking part in a clinical trial or becoming a lay member of the network. Lay members are stroke survivors, carers and anyone affected by stroke and each member joins the SRN’s Clinical Studies Groups to add a service user perspective to discussions and publications. They also provide advice on seminars and conferences.

Successful patient involvement: some examples from the Stroke Association

Approximately one third of stroke survivors experience a communication disorder known as aphasia. The Stroke Association is currently funding the EVA project led by Professor Jane Marshall at City University London which is evaluating the effects of a virtual environment for people with aphasia.

Consultants with aphasia have been recruited to support the design of the virtual communication environment, allowing a real insight into the way people with aphasia respond to the virtual environment. This will ultimately make the use of this technology for aphasia rehabilitation more successful.

Visual problems are common after stroke. Hemianopia, a condition where there is a loss of one half of the visual field in both eyes occurs in about 20 per cent of patients. This condition can make stroke survivors more prone to falls, affect reading ability and significantly affect their quality of life. The Stroke Association is currently funding the VISION trial led by Dr Fiona Rowe at the University of Liverpool. This trial aims to compare two types of treatment for hemianopia after stroke-

• the use of visual scanning which involves training the individual to make more effective eye movements into the side of their visual loss to compensate better for their blind side and
• the use of Prism glasses which are used to move images of objects in the blind side of vision into the seeing part of vision.

This trial has benefited from the inclusion of a stroke survivor with visual impairment on the research team. This stroke survivor was involved in preparing the grant application as well as acting as a consultant throughout the trial including developing the information sheet and consent form, and advising on dissemination routes for the final results.

Recruitment of stroke survivors to clinical trials

It is important to take into account the difficulties of involving stroke survivors in research. There are some common problems after stroke including communication difficulties and cognitive problems which can affect a person’s ability to get involved.

The Stroke Association has produced a clinical trials booklet explaining what a clinical trial is and what it involves in order to help patients make informed decisions about taking part in research. To promote the inclusion of stroke survivors with aphasia, we have also produced an aphasia-friendly version so that people with who have trouble understanding written information can also understand the process and get involved. But a lot more work needs to be done to ensure that all researchers make an effort to include all stroke survivors, e.g. by ensuring that the patient information provided for their trial is accessible to those with communication difficulties.

People affected by a condition have the right to have a say in what research is undertaken. It is also very important to inform patients on the outcome of research projects. Many studies do this through a dedicated trial website, or newsletters.

Over the past 20 years the Stroke Association has supported vital stroke research and we continue to inform the public of the achievements of the research we have funded so that they are aware of the difference their donations make.