Public and Patient Involvement

(Kristin Liabo, Leon Farmer & Penny Thompson)

Aims for involving patients and carers in SAMueL: The research team planned to invite two people with personal experience of having a stroke, or personal experience of caring for a family member at home after they had a stroke, to sit on the study steering group. In addition we planned to establish a patient and carer advisory group of 6-8 members who would meet with the lead researchers separately to the steering group.

The aim of the involvement was to help keep the study patient-centred, for patients and carers to inform the work of the modellers in terms of what aspects of the data to focus on, and to inform discussions about study dissemination and next steps at the end of the study.

How patients and carers were involved in this study: Two patient and carer members of the study steering group were both invited to join the team due to their relevant experiences and membership of PenPEG (the Peninsula Public Engagement Group). Leon Farmer (stroke survivor) and Penny Thompson (carer) both knew co-applicant Kristin Liabo from other studies they had been involved in. Penny was also involved in the funding application and a named collaborator to the bid.

To establish the patient and carer-specific advisory group we contacted rehabilitation groups for stroke survivors and distributed a call to patients who had signed up as interested in stroke research with the local hospital R&D department. Initially we established a group of six people: two people were carers and four were stroke survivors, two women and four men, including Leon Farmer and Penny Thompson.

Five of the advisory group members attended a training workshop in spring 2019. This workshop focused primarily on how patient and carer experience can contribute in research. The workshop was led by Kristina Staley, visiting research fellow with the PenARC Patient and Public Involvement and Engagement team. In addition, Mike Allen presented plans for the modelling work and Julia Frost presented plans for the qualitative interviews with stroke physicians.

After the workshop, one member of the advisory group decided not to continue their involvement due to old age and frailty, as he felt his cognitive abilities were not up to following group discussions. He was offered the opportunity of being involved on a one-to-one basis, but this did not turn out to be an alternative due to his deteriorating health.

The remaining five members met again in September and November 2019. At both these meetings Mike Allen presented on the progress and outputs from the modelling work and invited discussion about which angles of the work were more important from a patient perspective. One of the meetings were held at the Royal Devon & Exeter Hospital and also attended by Mr Martin James. Kristin Liabo organised and facilitated both meetings and informed the patient advisory group about the qualitative research.

Leon Farmer and Penny Thompson have been integral members of the project steering group throughout the study period. This continued after lock down, with meetings being transferred to Microsoft Teams. The other three patient advisory group members did not continue their involvement with SAMueL during the Covid-19 pandemic. One of these members did not respond to meeting invitations. Another member experienced a bereavement and the third was not able to attend online meetings. Kristin Liabo kept in phone contact with the two latter members who were kept up to date about the study via one-to-one emails and phone conversations. It was not meaningful to involve people in this type of research by one-to-one phone conversations, but the occasional contact meant they were aware of the direction the research was going in and the challenges presented due to Covid-19. One of these members have move on to sit on the study reference group to another NIHR-funded study on acute stroke and has officially withdrawn from SAMueL to avoid conflict of interest.

Patient and carer contributions to this study: We have seen impact from patient and carer involvement in three main areas. First, having patients and carers in the room reminds the researchers of the patient perspective and ultimate purpose of the research. Patient and carer representatives have asked questions about the benefit to patients, anchored in their personal experience of stroke care. This has been particularly valuable in a study that does not collect data directly from patients.

Second, communicating the methods of SAMueL, and the findings, to patients and carers, has been valuable for the researchers in terms of learning to speak more clearly about their work, and about the public value of their research. Having a responsive audience has been useful for making the presentation of the research methods and results more accessible. Finally, and perhaps most importantly, the dialectic process that is public involvement has given the researchers a deeper understanding of their own work. As argued by the late Nobel Prize winner of physics, Richard Feynman, explaining things in simpler terms is hugely beneficial for the person doing the explanation. This has been borne out in the SAMueL study time and again.

The involvement in this study has also been of some interest and benefit to the patients and carers themselves. A testimony of this can be found on the PenARC website, where Leon Farmer speaks about how he has been involved and what it means to him: https://arc-swp.nihr.ac.uk/patient-and-public-involvement/