Patient involvement in stroke research: examples of good practice in the United Kingdom
Dr Madina Kara on behalf of the Stroke Association
Dr Madina Kara
240 City Road, London, EC1V 2PR, UK
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.
The StrokeAssociation is a stroke support organisation that works with stroke survivors and their families in the United Kingdom to provide information, advice and support, as well as funding vital research into stroke. We place the stroke survivor at the heart of everything we do and this includes in all our research activities.
Stroke survivors help choose the research we fund
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. This way, we make sure that our research addresses the needs of the people who will ultimately benefit from it.
Stroke survivors as research co-designers
Example 1: For an aphasia trial
Approximately one third of stroke survivors experience a communication disorder known as aphasia. We are 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. The EVA consultants with aphasia are paid members of the project team. They are involved in participative design workshops in which they feedback on all aspects of the technology. For example, they have advised the research team on what should (and should not) be included in the virtual world (EVA Park), and about navigation options. Professor Marshall says ‘Their input is helping to ensure that EVA Park will be enjoyable, beneficial and easy to use for people with aphasia’.
Example 2: For a vision trial
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 in the longer term. This condition can make stroke survivors more prone to falls, affect reading ability and significantly affect their quality of life. We are 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 area with visual loss, and
- the use of Prism glasses which are used to move images of objects from the blind side of vision into the seeing side.
This trial has benefited from the inclusion of a stroke survivor with visual impairment on the research team, who helped to prepare the grant application as well as acting as a consultant throughout the trial. They helped to develop the information sheet and consent form to make it accessible and clear and also advised on the best way to disseminate final results for patients and the public. “Involving a stroke survivor as an equal member of the grant team has been invaluable to the research,” explains Dr Rowe. “Her contributions have brought confidence and reassurance to the team that the research question is important, that the treatments offered are appropriate and that the information provided to stroke survivors is in a format acceptable to stroke survivors”
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 problemswhich can affect a person’s ability to understand and participate in research studies.
We have 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 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.