Having a stroke survivor (PB) involved when presenting the results of the study at the UK Stroke Forum added another dimension, a stroke survivor’s perspective, to dissemination (Fig. 6), and met the RDS recommendations for PPI [22] (Fig. 1). The conference delegates were keen to question him and find out more about his role within the study team.
The results of the MoTaStim-Foot study were also reported back to the study participants; they were all invited to a presentation at the University, with lunch and refreshments provided. A total of six participants and three carers attended (Fig. 7). In their position of PPI advisors for the study JJ and PB attended this feedback session. Although there was no formal role for them at this presentation, they were integral members of the research team, and it was considered that their presence at the meeting would be useful in case any participants had questions they wanted to address to them specifically as PPI advisors; it also gave an opportunity for those attending to find out more, through informal discussions over lunch, about the role of being a PPI advisor within our research team. Several participants from the MoTaStim-Foot study expressed an interest in undertaking this role, as well as participating in further research studies in the future. It was important for the PPI advisors to be invited and be part of this meeting, recognising the accomplishment of the MoTaStim-Foot study and the role they played in making the study successful. It also gave us another opportunity to thank them for the role they played in the study, helping to ensure they felt valued and respected.
The ability to be an important ‘cog in a wheel’ again, and feeling appreciated, comes across clearly in the PPI advisors’ vignettes below:
Vignette 1 (PB):
"Back in January 2017 I was asked by Alison if I would like to be a patient and public input (PPI) volunteer on a study that Keele University were doing called MoTaStim-Foot. I had been recommended by the physios from the [Haywood] hospital because of my attitude and determination to recover and to help in any research that might help myself or others. My background and job (a prison officer/tutor) meant communication was a strong point, I also taught art and although right-handed/right side affected, I managed to retrain my brain to produce paintings and drawings with my left hand. Some of these were produced to use in the research documentation. I was eager to help in any way I could and took any task given.
I was given the chance to increase my knowledge by doing GCP training at a hospital along with a group of hospital staff; it was at this stage that I felt out of my depth when I began to read the PowerPoint slides, but I didn’t suffer in silence and asked if they could stop using abbreviations that only mean something to people who work as medical professionals. They apologised and the whole day was very useful, learning things like how participants were recruited and how information was recorded and handled safely and securely.
My first task was a trial management group. I’m a people person that loves to meet and interact with others, so this study was a good thing to be involved with, as I feel it helped me put some things into perspective and share my experience with others to further their understanding of stroke and the effects on one’s life. Being a note taker was an interesting role, spotting people that weren’t engaging was a vital part whether that was because they were unable to do so because someone was too eager to share, or they were not comfortable due lack of confidence or communication difficulties due to their stroke. I found this very useful and became very good at it towards the end; it made me feel really good contributing to something so important. I found that doing the PPI role increased my need to help, so I became a volunteer with the Stroke Association and later became a stroke ambassador. I also got involved in a community-based music making group (STROKESTRA®-Stoke) which gave me a chance to take part and improve certain things that I set as targets, things that I felt were affecting my life due to stroke, and meet some extraordinary people who were living with similar things, learning how they cope and how their life has changed. I personally feel that my life has improved, and I have met some great people and learnt things about myself that have made my life easier and improved the life of others".
Vignette 2 (MJ and JJ’s story, told by JJ)
MJ: “Mel became a stroke survivor at the age of 55 years. He was told ‘"you may never walk again, you may never drive again and you may never work again"’. He did walk and drive again; however, he was unable to work again as an ophthalmic optician. Mel was passionate about getting stroke survivors back into useful lives. Being a stroke survivor himself, Mel knew the importance of research and trials and was so delighted to be asked to be a PPI volunteer for Alison. He always had a spring in his step when he went to Keele, enjoyed the company of the staff and patients, and felt a sense of pride and satisfaction, also a purpose using his knowledge. Mel knew the research trial would benefit his fellow stroke survivors, and had he lived, he would have seen their success. He would return home and tell me how rewarding it was to be part of such a great team, and he knew every effort was being made to make trials happen, I know he enjoyed ‘taking part’ at Keele. Sadly, Mel died in May 2016, never to know the outcome of Alison’s trial; however, he would have been so proud of Alison’s achievement”.
JJ: “T
his is now where I came into Alison’s life, she asked me if I would like to be a PPI volunteer. I have no qualifications, only life skills, so felt very honoured to be asked, but I did feel ‘out of my depth’ as I’m not an academic, learning isn’t easy. The training given was useful and with each PPI session I became more comfortable and grew in confidence. I saw patients not able to stand or walk, given insoles to stimulate the foot and physiotherapists working on the foot, blossom into being able to walk and do things we take for granted not only physically but mentally. Observing what clinical trials do from my perspective was an eye-opener, and I only hope the department can continue in more research and clinical trials. I know from my personal experience there is ‘LIFE AFTER STROKE’, I would continue to be a PPI volunteer if asked”
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The details regarding how the PPI advisors’ contributions to the MoTaStim-Foot study met the UK standards for patient involvement, and which aspects can be improved for the future are summarised in Table 1.
In summary, there were numerous positive outcomes resulting from the PPI advisors’ contributions to the MoTaStim-Foot study. PPI advisors helped to shape the research design and documentation, input into how the research was undertaken via their role in the trial management group, assist in data collection and dissemination of the results. There were no specific negative effects to having such an intensive level of PPI for the study; however, additional strategic planning and finance were necessary to ensure appropriate lines of communication were used and that PPI advisors were appropriately compensated for their time supporting the study.