Patient involvement in stroke research examples of good practice in the United Kingdom

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

Stroke Association

240 City Road, London, EC1V 2PR, UK

Madina.Kara@stroke.org.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

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. 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 problems which 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. 

SAFE: a pan-European approach to supporting stroke patients

Stroke Support Organisations (SSOs) come in a variety of flavours. Some are run solely by stroke survivors, some by healthcare professionals and others by a mixture of people with a professional or personal interest in stroke. At a minimum, most SSOs offer information and advice to stroke survivors, but they might also provide peer support, family counselling, rehabilitation therapy or welfare services. Many also engage in wider ranging activities such as awareness campaigning, prevention screening, lobbying for better services, and funding or facilitating stroke research. But despite all this heterogeneity, SSO are united by one common goal: to reduce the negative impact of stroke on individuals, their families and the wider society.

It is this shared agenda that brings together 26 unique SSOs from across Europe in the Stroke Alliance for Europe (SAFE). Each member organisation works within their own country to support people affected by stroke, but also comes together within SAFE to give stroke survivors a voice in the wider context of Europe. Working together at a pan-European level gives SSOs more leverage to lobby the EU government, to share best practice and to achieve a greater awareness for the cause.

The involvement of patients in health policy and medical research is becoming an increasing priority for the European Commission, and quite rightly so. No-one is better placed to define the requirements of a healthcare system than the end users. This is an expanding area of work for patient organisations and one in which a pan-European group like SAFE may add more value than individual SSOs alone.

SAFE is already a partner in several EC-funded stroke research projects and has contributed in a myriad of ways. Within the European Stroke Network, SAFE works as a translator and disseminator, making their complex preclinical research accessible to lay audiences. SAFE has produced a lay brochure showcasing their cutting-edge research and is in the process of translating it into eight European languages to reach a wider public audience. 

Patient representation in clinical research can bring benefits to all stakeholders. If consulted throughout the research design process, the involvement of patient groups can make sure trial protocols are feasible and acceptable to patients. The patient perspective can often highlight potential barriers to success that may have been overlooked by scientific investigators.  SAFE is currently involved in two large European clinical trials for acute stroke, sitting on the trial steering committee for the EuroHYP-1 trial and the Ethics Advisory Board for the WAKE-UP trial.

For EuroHYP-1, SAFE has played a key role in the development of accessible patient materials to support the trial. These include:

• the information booklet that is given to patients and family members at the time of trial recruitment
• a questionnaire to gather patient views on their treatment experiences
• a recovery diary to support and monitor patients in the three months after discharge from hospital

The provision of lay-friendly and supportive information will not only improve the patient experience but will also enhance patient recruitment, compliance and retention to follow-up, thereby improving the overall quality of the trial. 

SAFEs involvement in European stroke research allows its members to stay up-to-date on the latest breakthroughs and promising treatments. In turn they can pass on this potential live-saving knowledge to patients and healthcare professionals within their own countries.  By taking an active role in the World Stroke Organisation, SAFE hopes to raise the profile of SSOs across the globe and to demonstrate the value they can bring to the international stroke community.

Over the last five years, SAFE has supported the creation and development of many new SSOs, especially in Eastern parts of Europe where patient support organisations are not as prevalent. As the SAFE network grows, so too does its capacity to support research, to draw on best practice from a wide range of sources and to broadly disseminate research finding across country borders.

Dr Clare A Walton on behalf of the Stroke Alliance for Europe