Meet David Burgess, a powerful voice for stroke survivors and a Research Champion
Please tell us a little bit about yourself and your experience of health research….
After a long career in Nursing and Nursing Education, I retired in 2004. My Father-in-law had a stroke in 2003, I shared responsibility for his informal care with my late wife.
In 2004, my Father-in-law and I participated in a focus group evaluation of the impact of stroke on individuals and carers and how stroke services could be improved. During meetings of the focus group, it was apparent that many stroke survivors and their carers had experienced difficulties coping with the long-term effect of stroke. Many had become socially isolated through loss of mobility or because of communication difficulties, with consequent loss of confidence and depression after their stroke.
To ameliorate the isolation, I helped to establish a stroke support group, initially based in Wallsend, to cater for the needs of people living in the northern and western parts of North Tyneside.
In 2005, I was co-opted to serve on the Stroke Northumbria Executive Committee, participating in the developments in stroke care that followed on from a Government consultation in 2007.
In 2012, I became a Lay Member of the Stroke Research Network, joining the Patient, Carer and Public Involvement Panel. Members of the panel, drew on their personal experiences of stroke, to review and comment upon documents submitted by researchers, the aim being to improve the quality of stroke research.
The PCPI panel was disbanded in 2014, after reorganisation of the National Institute for Health Research (NIHR) and formation of the Clinical Research Network (CRN). Panel members were offered the opportunity to join the Stroke Association Service Users Research Panel (SURP), now named Stroke Voices.
Stroke Voices may take an advisory role for researchers to test their proposals in advance of applying for funding or alternatively, may be part of the Grant Awarding Panel, representing the voice of people ‘Affected by Stroke’ when deciding the awarding of grants for stroke research.
Alongside membership of the PCPI review Panels, I have served as the lay member of three Trial Steering Committees, providing a Patient and Public voice for the oversight and conduct of clinical trials into stroke care and treatment.
I also serve on the Local CRN (Stroke) PCPI Panel, meeting monthly with researchers to discuss their proposed study, to advise them during the development of their study.
In 2016, I was appointed, along with three colleagues, to serve as lay members of the National Institute for Health Research (NIHR) Stroke National Specialty Group, serving as a lay member of the Hyper-acute Stroke Research Centre (HSRC) Oversight Group, monitoring the research performance of the 12 HSRCs in England. We also assist with evaluating applications for approval of Hyper-acute Stroke Units wishing to become new HSRC’s, we are tasked with promoting Patient Carer and Public Involvement in research centres.
What motivated you to become a research champion?
During my clinical and educational roles, I became aware of the importance and the benefits of using research findings to improve clinical practice. In my own practice, this related to managing post-operative pain, by giving pre-operative information about the sort of pain that may be experienced and how this pain would be managed. I used research reports to better understand the potential causes and strategies for the prevention of pressure sores.
However, it was during ‘Dad’s’ admission to hospital, after his stroke, through requests for his participation in ongoing research studies, that I was made aware of current stroke research and the need for recruitment of participants into clinical trials.
My later participation in the Stroke Northumbria Executive Committee meetings, gave me first-hand experience of research improving clinical practice for people experiencing a Stroke, i.e. the use of ‘clot busting’ drugs to reduce long term disabilities, the creation of Hyper-acute stroke units and improvements in delivering rehabilitation.
Following my retirement, I wished to use my professional skills and knowledge. This, along with my personal insights into the long-term effects of stroke, focused my activities towards helping improve the early management, rehabilitation and continuing care for patients and their informal carers when they are affected by stroke.
What activities have you been involved with as a research champion and what difference do you feel they make to others and to research?
As a PCPI Member I review research proposals including plain English summaries, patient information sheets, consent forms, questionnaires and details of any procedures to be conducted, including the timing/duration of any physical assessments or collection of biological samples. Feedback to researchers is intended to inform and advise researchers of changes or improvements required to their documents or study protocol to improve the research experience for participants so they would be better informed and able to engage with the study and give informed consent. Feedback would also, hopefully, aid the recruitment and retention of participants to research studies.
Through membership of trial steering committees, I represent patients and carers in the study, commenting upon issues raised, e.g. seeking to improve recruitment into one study, reflecting upon the incidence of ‘untoward accidents’ in another and helping the team to develop survey questions that were easy for stroke survivors with communication problems to understand.
My experience of participating in Stroke Research has been that Chief Investigators and Chairs of Trial Steering Committees have explained complex issues arising from the study and have subsequently given due consideration of my comments; such that I consider my participation has helped with the progress and final outcomes of studies.
I am aware that on at least one occasion, feedback from the PCPI Panel caused one research project team to discontinue their proposed study because feedback had demonstrated to them it wasn’t necessary.
How has being a research champion benefited you and how have you been supported?
It has been a pleasure to participate in the development and implementation of stroke research that has improved stroke services.
I have been able to use my professional and personal experience of Stroke Services, to ensure that stroke research is relevant to the needs of the stroke community.
At the commencement of PCP Involvement, I attended training for the role, on joining the PCPI panel, an experienced panel member was allocated to mentor me, to ensure my ability to participate in discussions. We are encouraged to attend Stroke Research Conferences and the Stroke Assembly for stroke survivors and their carers’. This helped to broaden my perspectives and enhance my understanding of the issues of concern for all engaged in stroke services.
Do you have any other comments...
Researchers can become distanced from the realities of living life after a stroke. The role of the Research Champion is to bring something of the reality of living life with a condition and the impact research studies may have on participants, whether it be stroke or any other illness. The input of the patient and carer voice into research helps to identify priorities for study and minimise the burden for participants in research studies.
I believe my promotion of the needs of people affected by stroke has positively enhanced research into stroke care and treatment.