ICAMS Stroke Group
Public Engagement with Research Case studies
Introduction
University of Glasgow has a proud tradition of important and impactful stroke research. Historically, research was ‘done to’ patients by scientific experts. As stroke researchers, we wanted to work closer with the real experts - people whose lives have been affected by stroke.
We created a group for stroke survivors and their caregivers to learn about research and become involved – the Glasgow Stroke Research Users Group. We have been overwhelmed by the enthusiasm shown and already stroke survivors from our group have worked with research teams, spoken at scientific meetings and appeared on television. The partnership we have created is creating positive change in stroke research and serves as a model for how researchers and patients can work together.
In the MVLS Engagement Awards, ICAMS Stroke Group Highly Commended MVLS Engagement Awards 2018 rewarding good public engagement practice with MVLS research.
Project partners
The success of the Stroke Research Users Group has been through our collaborations. The group is a partnership between the University of Glasgow, the Scottish Stroke Research Network and NHS Greater Glasgow and Clyde. Of, course the most important partners are people living with stroke. Through word of mouth, social media and with third sector partners such as the Stroke Association we quickly developed a large group of enthusiastic and research interested stroke survivors.
The group began with ICAMS researchers but we quickly developed links with Institute of Health and Wellbeing, Institute of Neuroscience and Psychology and NHS. In 2019 we wish to engage more with patient groups that have been set-up by other research teams. We hope to learn from these groups but also share some of our experiences.
Where did the idea or need come from for the engagement?
University of Glasgow is one of the world’s leading centres for stroke research. In the Institute of Cardiovascular and Medical Sciences (ICAMS) stroke group, we enjoyed public events such as Explorathon and Café with Heart, but we wanted to move from passive sharing of research to more active engagement.
We recognised that the best stroke research, is research that is performed in partnership with the people who know most about stroke – stroke survivors and their caregivers. Across the Institute we had examples of individual studies where stroke survivors had worked with academics. However, there was no coordinated system for connecting research teams with stroke survivors or vice-versa. Together we developed ideas around a Glasgow Stroke Research ‘User Group’. Our vision was that this group would allow stroke survivors to engage with research and also make it easier for researchers to benefit from the input of people with lived experience of stroke.
Evaluation and Impact
We have always been careful to monitor our progress and ensure that we are delivering what we promised to the people who became involved. There isn’t space to describe all the group’s achievements, but specific highlights include:
Strengthening research: Funders are increasingly looking for evidence that researchers have worked with patients, carers and lay public and our group has already helped in the writing of a number of grant applications. The group helped with the Stroke Association Program Grant ‘APPLE’ (Assessing Post-stroke Psychology Longitudinal Evaluation) designing the projects, monitoring progress and helping interpret the results.
Giving a platform to stroke survivors: In our initial work with stroke survivors, we learned that people wanted to share their experience with others; people wanted to stay connected with stroke specialists and people wanted to find about of potential new treatments. Our group allows for all of this, creating a space where stroke survivors, caregivers and academics can meet as equals, learning from each other’s’ knowledge and experience. Our professional networks allowed members to participate in other activities, for example Dr Terry Quinn’s role with the Scottish Parliament allowed group members to voice opinion on Scottish Government policy.
Making research visible and accessible: Not everyone in the group was ready to be directly involved in research, but they all wanted to hear about stroke research happening in Glasgow. We have worked to increase the visibility of local research. We have utilised social media (blogs, vlogs, twitter), have had a presence at stroke survivor meetings and have even had a lay member of the group interviewed on BBC’s ‘Trust me I’m a Doctor’. Our group also told us that they found descriptions of stroke research too technical. So, we worked with the American Heart Association ~(AHA) journal ‘Stroke’ and now offer a regular lay summary of research papers that is distributed by the AHA communications team.
Lessons learned
The development of the group has been an iterative process and we are grateful to all who have offered feedback. Working with people who are at differing stages in their stroke recovery presented challenges and we had to be flexible to the needs of our group. For example, we quickly learned the importance of accessibility – both physical accessibility in terms of meeting venues, but also the accessibility of content of any talks or presentations.
People can contribute to research in many different ways and a ‘one size fits all’ policy would not work in our diverse group. So, we ran workshops where we discussed various options for research involvement with each workshop co-hosted by a researcher and a stroke survivor. From our main group we have created subgroups for people with specific interests, for example those who wish to work with stroke researchers on patient facing materials or those who want to help with prioritising research questions.
Legacy
The Stroke Research Group is a resource that researchers can use to assist with any aspect of a project. Our success is evidenced by the number of requests we have had, both from people wanting to join the group and from researchers wanting to engage with us to improve their science. The Stroke Research Users Group goes from strength to strength. We are proud of our success but realise that there is still lots to do. When have exciting plans for 2019, for example involving the group in pre-clinical research. So far, our group have predominantly worked on clinical research projects. Many in the group are also interested in pre-clinical research and helping with these projects if possible. There are challenges to lay involvement in laboratory based research but within Glasgow we have a strong preclinical stroke program and we hope to create partnerships that will benefit this research theme. Another theme for 2019 will be strengthening our online visibility. The group felt that many websites were not suited to stroke survivors’ needs. So, a group of stroke survivors are working with us to create new, user friendly web-content on the Scottish Stroke Research Network pages.
At the UK Stroke Forum (the largest stroke meeting in the UK) the Glasgow Stroke Research Group were asked to speak as part of the conference opening plenary. Mr Paul Gribbin, a stroke survivor and one of the early members of our group, spoke passionately about the benefits of research. He shared the platform with Professor Stephen Powis (Medical Director of NHS England and Co-chair of the National Stroke Plan) and delivered his thoughts to over 2,000 delegates. As our group gives stroke survivors a voice, we will let Paul have the final words: “….when I first had my stroke, I thought my life was over…working with you guys has built up my confidence. Before I didn’t leave the house, now I am in the papers and on TV talking about stroke research – its been a lifeline.”